I wonder if I’ll ever feel normal again. I am so very tired.
Im on hydroxy and have peripheral neuropathy on my leg and foot. I was prescribed amitriptyline and it does help a lot. My problem is I feel so sleepy all day long and when I go to bed, I fall asleep right away but wake up after 3 hours and that’s that..quite often. My GP gave me zopiclone but I shouldn’t take this with amitriptyline my haematologist says. Vicious circle!
What I’d like to know is, does anyone know if when platelets go down to normal level, I’ll be able to stop hydroxycarbamide? I’ve got a appointment in a couple of weeks so will ask my haematologist..but just want to know if anyone has stopped hydroxy after normal platelets
Thank you
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Cokopops
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In most cases controlling our blood counts requires "real" medicine rather than just diet etc. And the need usually continues, with some rare exceptions. But there are good discussions on PLT levels and whether PLT requires controlling at all in every case. Has your Dr discussed these details? What are your recent PLT counts?
When i was on HU I needed to keep it up to hold my blood counts. But how we continue matters; we can and do adjust our dose based on needs and side effects. There is usually no reason to take more than required for safe blood counts.
If you do need tight control of your counts and still have trouble with HU, you can ask Dr about interferon (Pegasys, Besremi) . Many do well on it who did not on HU.
Hi I am from East Sussex! And I sleep ok til about 3 and then I wake hourly til 7. I subscribe to Head space. They have sleep stories than include a short relaxation. Every time I wake up I listen to one, often the same one 4 or more times. I fall back to sleep pretty quickly.On the PN front I read that if it is not too bad you can take supplements. I started r lipoic acid and benfotiamine some months ago. The burning and freezing numbness has gone. My feet are now warm although I feel the skin is hard and less sensitive. I buy both on line. I have an afternoon rest but can keep that to under an hour. Good luck with your endeavours. Ps I also go for a walk on Ashdon forest each morning even when I don't want to. Habit helps.
Hello MPort your post caught my attention in particularly your feet issues. I also have hard skin on one foot weird, and suffer burning throughout the body. Do you think hydroxy is linked to these skin issues, l also have dark pigmentation on my face 🤔.Adiewon
Sorry to hear of your problems. I was on hydroxy for about a year 15 years ago so I can't comment on above. I have PV. I thought interferon was the cause of NP but I could be wrong. Others may be able to comment on your problems. Good luck.
Note that the erythromelalgia like burning pain is a fairly common MPN microvascular symptom. Hydroxy can help with this. The peripheral neuropathy is a nerve issue. There has been some similar conversations about this with other on the forum
As always, it is important to consult with a MPN Specialist on these kinds of issues. Your care team always needs to know when you are experiencing symptoms or side effects.
Hi, sorry to hear you're feeling so tired at the moment. I was on HU Initially, but I couldn't tolerate it...kept falling asleep in the daytime and I wasn't able to work either with the added brain fog.
After a few months I was swapped over to Pegasys interferon, and felt so much better straight away x
It's worth talking to your consultant about it....different drugs suit different people.
If you were to stop the HU your blood results would most likely deteriorate again x
I should think the amitriptilyne makes you sleepy in the day. Try getting lots of fresh air walking . Difficult to deal with if you have leg pains . Hope you can get back on track . The blood disorder maybe makes you tired as well as the antidepressants not surprised you are tired. I get out in the fresh air as much as possible even with leg pains. I’d prefer to stop hydroxy but need it . Not tried an alternative as side affects with all drugs. Had first venesection which didn’t go well . Blood pressure dropped to 65/52 and felt faint. Good luck. Hope you feel better soon.
Re your BP drop after venesections. I used to have this problem. Solved itwith infusionn in andon blood out. I had one needle dropping in fluid replacement and when that was well established venesection started. Amount taken was carefully monitored. But I had venesection in New Zealand and the blood drained so fast and they took too much I was stretchered to emergency for infusion. So I guess some of us are extra sensitive.
I have only had to have one venesection but I was told to be very well hydrated beforehand and indeed was encouraged to drink a large glass of water as I waited. I did not have any problems.
Hi Cokopops, I have ET and am on Hydroxy, in the initial months I though I’d self harm with the burning in my feet always present at night. I then ( although I was sure it would make no difference) started to use a Cream Moisturiser ‘Perfect For Dry Sensitive and Eczema Prone Skin’, absolutely unbelievably to me, it worked immediately and I have included it my daily routine. My Wife takes Amitripyline, but is careful when, as if she takes it too early in the day she’s sleepy at 8pm whilst if she takes it too late she has terrible problems waking up and functioning in the morning. Sorry to ramble on - hope that is helpful.
I’m so glad you posted that you only sleep about 3 hours. I’m in the same boat. As for stopping medication I’m afraid not. Once you are stable it will be reduced.Sorry
I started having trouble with HU and after 18 months of increasing muscle loss, muscle tightness, weight gain, SOB and fatigue I was taken off of it. Felt normal within a week. I’m 1 month into Besremi and feeling great! I’m an athletic soul and feel 15 yrs younger compared to HU. Have you had your Vitamin B12 checked? That may relate to your foot/leg symptoms.
I know they go back up if you stop taking hydroxy but perhaps you can take a different medication. I sometimes take gabapentin to sleep. It really knocks me out for at least 5 hours and I feel good the next day. Takes about an hour to kick in. Good luck.
Combining a non-benzodiazepine hypnotic hypnotic sleep aid like zopiclone with amitriptyline risks additive effects for central nervous system depression and psychomotor impairment, While it is done at times, it needs to be closely monitored by a physician familiar with these medications. Ideally, this would be a sleep specialist, a neurologist, or a psychiatrist.
Hydroxyurea will only control thrombocytosis for as long as you take it. You may find a reduction in adverse effects if you reduce the dose, but should expect platelet levels to rise.
If you find you are unable to tolerate hydroxy, there are other options to review with a MPN Specialist.
Suggest consulting with a sleep specialist bout the insomnia. Insomnia can have multiple causes, including MPNs, anxiety, medication adverse effects, and more.
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