MPN Voice
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Should I stop the Hydroxy ?

My hubby and I have both caught the winter flu virus and I have never felt so I'll in my life. I know my immune system is suppressed because of the hydroxy so I am wondering if I should stop it for a few days. The sweat is pouring off me, I ache all over, my throat feels like I have swallowed glass and I just don't know what to do. Any advice truly appreciated.

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In My opinion will be no problem if you stop for a while the hydroxy, the worst scenario is hematocrit will increase to much and you must do venesection . I achieved to overpass two time this winter using lemon , vitamin C and others low medicine from pharmacy but in shock dose without stopping hydroxy. i wish you to succes, and let us know how is going on

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Hi Jilly, oooh you do have a time! This flu is absolutely horrendous and 3 members of our family and dear friend all commented the same exact words "Have never felt so ill in the whole of my life", so it is understandable you and your Hubby have been so incredibly poorly. A very nasty virus. But everything points to rest and masses of water and vitamin C, and can you take Turmeric capsules too, as that reduces inflammation. I am a big advocate of this now, having had to give up all the normal chemo drugs and it seems other people are also having success with this. Very best wishes and hope a far better year for you and your Hubby. Tinkerbell

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Hi jillydabrat,

Tinker bell is right. My heam, a lovely Indian lady has told me that turmeric is good for the immune system. I have been taking it for 4 months now, I still get colds but nothing worse thank goodness!

I hope you both start to feel better soon. I think it’s a case of riding it out once you have it. Keep warm and drink plenty.

Best regards

Judy x

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Hi Jilly, feel really sorry for you, were you not offered the flu jab being as you take a chemo drug? I have had friends stricken down with this strain of flu and are really unwell, think they call it Australian as lots of people were struck down with it there.

My only suggestion is lots of vitamin c, plenty of fluids, bed rest, and stay in the warm. I find when I go out and about people sneezing and coughing and not covering their mouths and noses when doing so, and since October I have averaged a cold a month Yuk🤧😷 but at least the flu has not hit me thank god!! Know how you feel though, but I do feel that once recovered you need to speak with your GP to see if you can be offered the jab in the future especially as you have no immune system or at best it’s compromised, it may not stop it, but at least it will not be as bad.

Wishing you a speedy recovery.

Jean x

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I had the flu jab Jenny but it's done nothing to hold this back. My chest feels like it's been torn apart every time I cough. I have no appetite so have eaten only a cup of soup in 3 days but my throat is like razors. Standing in the shower I am dizzy as hell and from 4 this morning I was watching the minutes go past so I could have paracetamol and other pain relief. I have been really lucky avoiding any bugs until now. Hubby got it first and when I went to the doctor's for my B12 jab I asked if I could have a mask from them to try and project myself but they said they didn't have any. Strange when they do minor surgery clinics?

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i would NOT stop the HU myself - no reason to think it's making you worse and u r taking it for a reason. Even if u did stop, by the time any positive effects came through (e.g. more white blood cells) u would b over the flu

if u r tempted why not ring your haemo and ask before u do anything

get well soon

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Hi Jane, the Hydroxy is not making me worse but it does suppress your immune system. This is such a horrible bug that I need my immune system at full working order to fight it.

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get well soon!

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Over three weeks felt rotten. I use a natural herbal medication.

Combined with lemon and hot water and of course water by the bucket full.

Food tasted like cardboard so spicy foods own home made curries.

Little and often.

Melted myself warm. Socks in bed and pjs.

I hope you feel better soon.

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I didn't take my hydroxy last night. I am desperate for some relief so I am giving my body a couple of days rest so it can start fighting this horrible virus. I will tell my consultant so any significant changes in my blood results can be explained.

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I was on vacation over Christmas and got a nasty cold I couldn’t shake. I’d start to feel better only if i didn’t take HU then bad again the following day when I did. As I needed to be able to fly home the nurse said I could stop it for two days and resume at home. That seemed to do the trick for me. It was easier to fight it at home even though slower because of HU. I hope this helps.

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Hi Jilly, so sorry to hear that you and your husband have been struck down with the flu, BUT you should get some advice from your haematologist or haematology nurse before you stop taking your Hydroxy, most haematology departments have specialist nurses who can give you advice by phone, so it might be worth phoning the hospital and ask to speak to a haematology nurse. Hope you both feel better soon. Maz x x x

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Hi Maz, thanks for the advice. My hubby phoned the Haematology Dept this morning as I was due for my review appt this afternoon. My Consultant's secretary was lovely and she put hubby through to the Haem. Nurses who's only advice was to cal the GP. I can't call because I have no voice. Our GP runs a call back system so we are waiting for a return call now. I had a good nights sleep, the first in 5 days, so feel more refreshed but I have a painful band around my ribs now from coughing so much. Will see what doctor says. Thanks Maz xx

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GP has done an immediate prescription for antibiotics which hubby is picking up now. He did offer to do a home visit but I didn't want to call him out at such a demanding time for them. He did warn though that if my chest hadn't cleared by the end of the course then I was to call for an urgent appointment. Thanks everyone

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