I suffer from ET/PV and have been taking 500 mg. HU daily since May last year. I take Xarelto 20 mg. daily (blood thinner).
I also suffer from life-long severe restless legs syndrome. At present I am being tried on Temgesic tablets (buprenorphine) to give me some quality of life. The inability to sit still can start at 5 pm and continue relentlessly for hours, during which time my legs and sometimes also my arms and shoulders are moving all the time. Nothing stops this apart from standing and walking, so that at 80 yo this is difficult. The Temgesic is not working too well but it is early days.
Low magnesium can make restless legs syndrome worse and I wondered does anyone here know if hydroxycarbamide can deplete magnesium.
I also suffer insomnia, getting sleep from 11.30 pm until 3.30 am approximately. I then cannot get any more sleep at all and am exhausted all the time. I know HU can cause tiredness and certainly this seems true for me. I take mine in the morning and wondered if I would be better to take it at night. I have to take the Temgesic at night and it is supposed to help with sleep but although it deals with the restlessness I still cannot get more than 4 hours per night.
I should also mention that I have neuropathy in both feet - starting slightly in the left before the HU treatment but then spreading to right. The discomfort with this seems to get worse as the night goes on.
Any hints or tips would be very welcome as I am so weary I cannot function during the day. With thanks
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Jelbea
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It is often quite difficult to sort out what is caused by the MPN, what is caused by the drugs used to treat, and what is unrelated. Sometimes the timing of symptoms is the biggest clue.
The deregulation of the JAK-STAT pathway does more than cause the body to make too many platelets. it also causes the body to make too many inflammatory cytokines. This promotes a pro-inflammatory environment that is thought to cause a variety of constitutions/secondary symptoms we experience. These symptoms include insomnia. Fortunately there are interventions for this problem.
Hydroxyurea can have a number of adverse effects. Unfortunately, these include peripheral neuropathy. online.epocrates.com/drugs/...
Peripheral neuropathy can also occur as an independent issue. Others on the forum have reported that HU can contribute to magnesium deficiency, but I have not seen the literature to support this.
I expect you already know that magnesium deficiency can cause restless leg syndrome and leg cramps. This did happen to me as a result of needing to take Nexium long-term. The leg cramps stopped when I started on a Magnesium supplement. I worked with my Integrative medicine doc to titrate the dose to what I need based on measure Mg levels.
Hopefully you are already seeing a MPN Specialist who can help you sort this out. Most hematologists have little experience with MPNs are do not have the KSAs to provide optimal care. Just in case, here is a list. mpnforum.com/list-hem./
In terms of solutions, a few suggestions.
Peripheral neuropathy - assessment by both a Neurologist and a MPN Specialist. Ensure the specialists collaborate. Neuropathy is a known serious adverse effect from HU. If HU is the likely cause, then the HU will need to be discontinued and another med used to treat the PV. Fortunately there are other options (Jakafi, Besremi/Pegasys). Note that it can take months for the neuropathy to resolve when the HU is discontinued.
Insomnia - best to follow a tier of interventions
1. Practice good sleep hygiene.
2. Gentle/safe supplements to support sleep (e.g. chamomile, valerian, tryptophan, melatonin, etc). Do always let your care team know if you choose to use any supplement.
2. Cognitive Behavior Therapy for insomnia.
4. Medications - when all else fails. Note that many sleep medications disrupt sleep architecture. Many can knock you out but you will not get restful sleep. There is one class of sleep meds that does not have this problem - dual orexin receptor antagonists (Belsomra, Dayvigo). Note that I do not support the use of sleep meds as a first choice. There can still be issues even with the better sleep meds. I do use Belsomra as it is the only thing that has ever allowed me to get consistent quality sleep. Unfortunately I have two conditions that both cause insomnia (PV, NF1), so the sleep-deck was stacked for me. While Belsomra is working for me, i would not suggest it is the right choice for everyone. Like all meds, we have to weigh the risks and benefits when using them.
Hope that helps. All the best getting things sorted out.
Thank you Hunter for your detailed reply. Unfortunately, I cannot take most of the sleep aids mentioned. I already take a blood thinner so chamomile is out and melatonin at a very low dose caused my heart to race. I have already had CBT therapy and I checked the others you mentioned but ruled them out because of some of the precautions. I have always had severe restless legs and I do think that the ET/PV is probably contributing to this from more inflammation and upset of the central nervous system. 3 - 4 hours sleep per night is what I have been existing on for a long time now and it just is not enough. This is why Temgesic is being tried but I am not responding as many others with RLS are. I also have spinal stenosis which adds to the RLS and it was hoped the Temgesic would treat the spinal pain and RLs.
I had very slight numbness in my left foot which I assumed was slight neuropathy for about three months before starting HU and spread to both feet after starting HU. HU brought my blood counts under control really quickly and apart from weariness and very occasional nausea I have tolerated it very well. I asked haematologist re neuropathy and he denied it had anything to do with HU although it is mentioned in the patient leaflet. I am very sensitive to a lot of medications and trying to change from HU might be a problem.
I would love to see an MPN specialist but we do not have one in Northern Ireland and I am unable to travel. Also I think it would upset my present haem. team. It is a very closed shop here and easy to tramp on toes. I think I told you I had taken my former GP to task regarding forgetting to request an app at haematology. I then changed to a different practice but in a small town the doctors know each other and my present GP treats me very coldly as she obviously knows I dared to complain. At my age I do not have enough strength to keep battling and feel I shall just have to accept things as they are. I envy people who say their doctor is so helpful - it must make things so much easier.
However, enough complaining and again thankyou so much for the time taken in replying.
It is unfortunate that there are no MPN Specialists in North Ireland. Being unable to travel does limit access to care. Others in North Ireland and elsewhere have reported similar experiences to what you have experienced. One can only hope the efforts to improve quality of care will be successful. People should never fear retaliation for advocating for themselves. This is a fundamental right we all have as patients and human beings.
I have tried to live on a few hours of sleep per night. It cannot be done. It is exhausting and destroys health. Please do keep looking for solutions. I have no idea if the dual orexin receptor antagonists would work for you, bu they have made a huge difference in my quality of sleep/life.
Do please hang in there and know that we all support you in managing as best you can. You are not alone and if nothing else, we are all hear to listen and understand.
Dear Hunter, I have been suffering more and more from the foot problems and noted also that the soles of my feet go red and the burning pain can keep me awake all night. I had been assured by three different haematology doctors that my foot problems had nothing to do with my diagnosis and/or treatment. I took on myself to email Professor Claire Harrison who is an MPN specialist in Guys hospital in London to ask her opinion. She emailed me back and confirmed what I had thought was wrong which is erythromelalgia. She said I would need my treatment looked at and probably aspirin added in and my blood thinner reduced accordingly. I then asked if she would oversee my treatment with my haematologists and she gave me a name of Professor Mary McMullin of Queen's University, Belfast, whom she says could probably help. I have emailed Prof. McMullin but as yet no response. However, it is in the middle of holiday time.
You were so adamant about getting an MPN specialist that I got the courage to go on ahead and ask directly. Thank you for that. I had my bloods checked to-day and will see my haematologist on Friday so shall have to take the matter up with him. I hope he is not too annoyed with me.
I also wanted to ask you or indeed anyone on the site about my eye symptoms. I was treated for migraine auras for 20 years with daily low dose aspirin very successfully.
I also have wet macular degeneration and get eye injections. I get dancing lights in front of my eyes when moving from bright to dark and this used to be intermittent but is now there all the time. It is a bit like the migraine aura but different. Is this also a microvascular symptom and if so can you tell me anything about it.
I would certainly go with the input from Dr. Harrison on the issue with the feet. That most certainly does sound like MPN-related erythromelalgia. Her advice is certainly something I would heed regarding how to treat it. Aspirin stopped this symptom immediately for me.
Unfortunately. many hematologists simply lack the knowledge to understand and treat MPN-related symptoms. That is why it is so important to seek consultation with MPN Specialists. It relly does not matter whether the current hematologist gets annoyed. Ethical doctors do not prioritize their ego over your health. They welcome input from more knowledgeable colleagues. I would immediately fire any doc who had a problem with my seeking an second opinion.
If Dr. McMullin is close enough you can consider switching your MPN care there. If not, you can periodically consult with her for guidance on your care plan which can be handled locally. If the local hematologist has a problem with that, replace the hematologist with one who will work appropriately with you in the way you wish.
Migraine can most certainly be a MPN related microvascular issue. Also note that there are two types of migraine. Visual migraines are brain based. Ocular migraines are retina based. Both type of migraine can cause various light phenomenon. One way to tell the difference is that Visual migraines tend to occur in both eyes and Ocular migraines tend to occur in one eye. Also note that other issues with the eyes can cause the dancing light phenomenon. Issues with the retina can cause flashers. I experience these due to posterior vitreous detachments. If you are experiencing flashers, this is something you should contact the eye doctor about immediately. Given you macular degeneration I would suggest contacting the eye doctor immediately anytime you experience a new visual issue. I would also let the MPN Specialist know ASAP.
Please do let us know what you learn. All the best moving forward.
Dear Hunter, Thank you for all the time and patience you have given me. I am very pleased to perhaps be getting the help of an MPN specialist as I am not too happy with some of the answers I have received. The lights I see are definitely not flashers as I did have this some years ago so know what it is like. This is more tiny dancing coloured lights when I turn from light to dark or on looking up at the night sky. It used to happen intermittently and is now constant. It was always the visual migraines I suffered - not always with pain but sometimes the aura occurred up to four times daily and at that stage made driving difficult as it took about 15 - 20 minutes for vision to clear. The small amount of daily aspirin worked wonders - cutting the occurrence to 2 or 3 a year. This was given to me at a London Migraine Clinic 20 years ago and they told me that my platelets were "clumping" and causing the auras. Obviously my blood disorder has been going on for a long time before being diagnosed.I shall let you know what transpires and again a very big thank you for your help.
That visual phenomena definitely needs proper followup. I experienced acephalgic visual migraines with scintillation, scotomoa, diplopia, and palinopsia after I had brain surgery for a tumor in my occipital lobe. I am followed by 2 neurologists, a neurophthalmologist, an ophthalmologist and various other ologists. I would suggest involving a neurologist who specializes migraine and a neuroophthalmologist to investigate the visual issue. These docs need to collaborate with the MPN Specialist as the issue may well involve the MPN too.
Found this on line- also, this lady has spoken at MPN webinars in the last couple of years, during the pandemic, and these could still be available on YouTube.
'Professor Mary Frances McMullin - Queens Uni Belfast
SCHOOL OF MEDICINE, DENTISTRY AND BIOMEDICAL SCIENCES
Professor McMullin’s research focus is on the myeloproliferative neoplasms and investigation the causes of congenital erythrocytosis.
She works on epigenetic mechanisms in myeloproliferative neoplasm and collaborates with colleagues investigating the epidemiology on these disorders. She participates in an active clinical trial programme in myeloproliferative neoplasms and acute myeloid leukaemia'
Yes Clematis26, the videos of forums are all available on our YouTube channel, including the video of the forum from Belfast held on 13 Nov 21, youtube.com/channel/UC-S_Ic...
Hi Clematis, Thank you for your reply. I shall look this up. I actually live about 12 miles from Belfast which was my city of birth. I have heard of Dr. McMullin and am very interested in seeing what she has to say.Good Wishes
I have some understanding of this debilitating and often underestimated condition, as my hubby has had it for decades. His RLS is linked to having RA, which is an inflammatory condition, so maybe there is some connection to the immune system and cytokine release. As we know, MPNs are an inflammatory condition too.
Magnesium and iron deficiency can contribute to symptoms of RLS too. My hubby is prescribed gabapentin throughout the day and pramipexole (Parkinson’s drug) at night. These drugs just take the edge off and enable him to have ‘some’ sleep. I do hope you find the strength to pursue this further with your healthcare provider. Maybe take someone with you to the GPs to advocate on your behalf.
Hi mhos61 - Thank you for your response. You and your husband have a lot going on between you. I do feel that my ET/PV is probably causing more inflammation which in turn is making my restless legs much worse. My sleep is on average 4 hours per night - just not enough to be able to function the following day. I have been tried on everything for RLS and just recently started on Temgesic tablets (buprenorphine) but am finding getting the correct dosage in place. HealthUnlocked has a RSL site which is full of lots of very good information. Unfortunately GPs on the whole know very little about this very distressing condition - in fact I was told by one that there was no such thing as restless legs whilst he was laughing!!!Good wishes to you and your husband.
I also have terrible restless leg symptoms, inherited from my mom. I've taken gabapentin for years, sometimes having to increase the dose because my legs, and yes, whole body can not stop moving. I recently started taking pramipexole which has helped significantly. It is hard for people to understand RLS, must own husband still asks if massaging my legs would be helpful. Keeping my feet and legs warm is useful, but over time I definitely needed chemical treatment.
Hi Mybest - Thank you for your reply. It is a horrid condition and actually causes many suicides each year. I was unable to take gabapentin which triggered migraine headaches and have been tried on almost everything else. Now I have started buprenorphine tablets in the last month and still trying to adjust the dosage so that I do not take too much or too little.I see you like keeping your feet warm and I am the opposite. I usually go to sleep with my legs and feet outside the duvet. There is very good information on the RLS site on HealthUnlocked with kind and caring people, just like on this site. We must all support each other.
Goodness, what a carry on you are having, it is hard to be positive with so much going on. I have ET and take Hydroxy and I did read somewhere that this drug can deplete our magnesium levels. So on this information I commenced taking a magnesium supplement. At my next appointment with my MPN consultant I asked the question relating to hydroxy and magnesium and the consultant confirmed that hydroxy can cause a magnesium shortage. So on that info I requested my magnesium be checked. My levels turned out to be fine but I am not sure if it would have been the case without the supplement or if the supplement has done the trick. Regardless, I will continue to take my magnesium (just a cheap one from the local shop), it's one less thing to worry about. I hope you get all your 'bits and bobs' sorted out soon, quality of life is everything.
Dear Janis, Thankyou so much for your reply. I used to take a magnesium supplement before I was diagnosed with ET/PV although I was never lacking in it. When I was diagnosed I was told not to take any supplements. However, I do feel that the magnesium helped me. As I said I am on HU but also on a blood thinner - Xarelto. I am not sure if it is OK to take mag with the blood thinner and have not yet been able to find out. I shall keep trying.Everyone on this site has been so helpful in their replies. Sometimes just knowing that people understand and care is enough to keep one going, even when the chips are down.
Jelbea, vitamin D and B1 need adequate magnesium to become bioactive. There are many causes for loss of magnesium hydrea being one as listed in the medicinenet link as is vitamin D. The krispin link contains others. There is a strong association between RLS and low vitamin D. Vitamin B1 clears lactic acid so a B1 deficiency may allow excess lactic acid buildup contributing to RLS. Your foot discomfort may indicate a deficiency of activated vitamin B1 in addition to B12 and folate. Benfotiamine and TTFD thiamine offer good absorption and are worth researching. A sublingual fast melt methylcobalamin B12 provides better absorption than oral forms. Have a 25-hydroxy vitamin D test to determine your vitamin D level. Always consult with your health care professional before using any supplement.
Thank you so much for all the information you have sent me. I have read the various reports and I will be seeing my haematologist on Friday when I shall discuss this with him. I suppose it is a balance as too much of some of the B vitamins would also do harm and could increase red blood cells.I used to take B12 and this was stopped when I was diagnosed with ET/PV last year. It was started again a few months ago along with a small dose of B6 by the haem doctor but at a very small dosage.
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