Starting HU

[jamieisabella]

Shortly to embark on HU which have been putting off and managing just with aspirin . Due to impending surgery platelets have to be lowered so no longer have a choice . A bit paranoid and anxious about taking chemo medication so would welcome some encouraging and cheery advice. Thx J

[JediReject]

Hi there Jamieisabella. . I think you will find generally here that many of us have endured and are still enduring HU very well whether we like it or not. I took it for 8 yrs and I recall popping my first capsule and waiting for some Tasmanian Devil type reaction where I would without warning spin out of control around my living room trashing all my glass, porcelain, tv etc before collapsing in a heap. Guess what - it didn't happen.

OK it doesn't help ones fatigue level but if you look back on the forum you can get a pretty good gauge of peops experiences taking it.

I was happy to take it as at the time especially as it worked and there weren't many options. If there are no better options for you I would say to you embrace it and tackle it head on with no qualms just don't expect it to turn you into a Whirling Dervish.

Good Luck.

Cheers JR

[jamieisabella in reply to JediReject]

Thx JR. I have been reading your various posts/replies over the months and they always make me smile. I wasn't thinking of the Tasmanian Devil routine but it's a thought 👹! JW

[JediReject in reply to jamieisabella]

Just over active imagination doin cartwheels again x

[piggie50]

Hi jamieisabella,

I was diagnosed with PV 9 years ago and started HU 18 months ago. I am on the lowest dose, 500mg 6 days per week. My platelets went from over 800 to 400 within the first 8 weeks of taking it. I put it off for as long as I could as I was really scared and anxious with the thought of taking it. All needless worry as I have had no side effects from the drug. Yes, I get tired but I was tired before so I can't say it's the HU causing it. And, my risk of stroke is now greatly reduced! I still worked full time until January this year when I reduced my hours, not because of the fatigue but because I want to spend more time with my family. I'm now busier on the days I don't work!

Yes, you will read all the negative comments but try and remember everyone is different and everyone reacts differently, you really will not know how your body will react until you take it. As you say you have no choice because of impending surgery but try not to worry as that won't help.

I hope you get some more positive comments.

Good luck

Judy x

[jamieisabella in reply to piggie50]

Thx for that. A really positive and encouraging response. People on the forum have been really helpful. I'm not quite so anxious now! J

[Phelpsy]

Hi Jamieisabella , you've been given great advice , I've been on Hu for 14months now

I had very little choice in the matter due to 900 platelet count & a TIA , but I'm very very greatful for such drugs , I was also very apprehensive about it , but I needn't of been I didn't turn into a green eyed Monster 😜 But apart from the fatigue from time to time I live a normal lifestyle,

I do look after myself more , a healthy diet lots of fresh fruit .& veg , & very little fat ,

So I suggest you pop the pill & think all the good it's doing you ,

I wish you the very best of health ,x

My Moto is ,,I have a MPN Disorder

IT doesn't have ME,x

Pam with ET ,

From Newcastle upon Tyne ,,

[revfee]

Hi Jamiesisabella, I can understand the anxiety, 'chemo' sounds scary, and obviously for some people there are some side effects. But I started taking HU in 1988, and apart from a 2 year respite in the 90's have been taking it ever since. I get tired, but HU or PV, who knows? Much better option for me than the risk of stroke or other blood clotting problems.

Try not to listen to the scare stories, there are loads of us out here living normal lives with HU and our MPNs!

good luck, Fee

[jane13]

you'll never notice it!

[mellieevans]

Hi there, I have to agree with the above. I take 2 x 500g per day and was so worried about all of these possible side effects. So far, 9 months later and I have not suffered any negative effects and my platelets have dropped from 1500 to 400. I still take aspirin daily too. Can only reiterate what our friends here say, that it is worth taking and you will see results. A healthy lifestyle of course also helps. Good luck! x

[Dodders]

Hi, I would echo the replies you've had so far; I'm now on 20 x 500mg per week having been on only 9 when first diagnosed with PV in 2005. No obvious problems or side effects. Good luck.

[Hidden]

Hi there jamieisabella

I have ET diagnosed 2012 following a portal vein thrombosis. After course of anti clotting meds started on aspirin but a platelets we're going up and high risk had to go on HU. Was scared and worried about effects but it has been ok. It has brought my platelets down to normal range and I have in fact just had my dose reduced. I am v lucky only take 500mg Mon & Fri now. It did make me feel fatigued at first but am used to it now. I take it in eve / at night so I sleep through it. Though with a much lower dose I feel it less. It has had a positive effect on my life.

You have this forum and as you can see from all the comments you get great support and advice from those who know what it's like. Good luck with it all and as others have said try not to worry. Liz c xxx

[lizzziep]

Don't believe all the scare stories!! I did until I found this forum!! I've been on HU for ET for 18 months now, I still haven't grown another head nor do I glow in the dark (although that would save on the electric bills). I have lost a little bit of hair, get excess stomach acid and very dry skin, but what's that compared to what could happen?? I take 16 x 500 mg per week, plus an aspirin each day. I've been to the hospital today and my platelets had risen slightly from last time but they are still under 400, from over 1100 when I started on it. Good luck with your operation.

[Loubprv Volunteer]

Hi

I don't think you really need my input after all the positive replies!

I've been on HU for 6 years and like everyone else sat with that little capsule on the table for a few minutes before taking it.

Sat back waiting for nausea, headaches, mouth ulcers, gout, and all the other stuff that is supposed to come with it.

guess what? Nada. Nothing.

Go ahead, yes it might be chemo, but it IS a very very mild form and I just take it now with nary a second thought.

Nothing to be concerned about, just make sure you drink lots of water when you take it - at least half a litre, eat copious amounts of good food, and walk lots.

The secret to staying healthy.

I've just invested in a nutri bullet along with lovely Violet, so watch this space and I'll tell you how I get on! Pulverised kale and spinach, crumbs, I feel an explosive derrière coming on!!!

You'll be fine.

Best wishes

Louise

xx

[jamieisabella in reply to Loubprv]

Thanks Louse, All advice gratefully received. I can't eat fruit like apples in their raw form. Does the nutri bullet act like a blender? Jude

[Loubprv Volunteer]

Hi Jude,

Apparently so!

Makes everything from fruit ( including peel if you're so inclined ) to veg into smoothies.

I bought a juicer a few years ago but gave up on it because half the fruit that I juiced ended up in the bin - it spat out all the roughage into a bin thing at the side, so I ended up making one glass of juice out of 3 large oranges which was jolly expensive.

This uses up everything.

If you have a look at nutribullet.org ( I think ) or google nutri bullet, there's a little video and lots of very positive endorsements.

The best thing is you can make a fruit smoothie but whack in some kale or spinach so you're getting all the benefits of green veg too.

Not cheap - around £90 - but what price health?

Louise

x

[jamieisabella in reply to Loubprv]

Had a quick Google and it looks just what I'm looking for as I find "the 5-10 a day" routine difficult to fit in so I end up not eating much fruit at all. Chucking in veggies as well sounds like quite an explosive combination. Should be fun.Thx again Jude