Windy city?

[Jennytheb]

Hi, anyone suffer too, bit delicate but I have trouble with wind these days, not sure if because on 3 500g Hydroxy? Anyone have any suggestions on what I could take, say probiotics or something please?

[hunter5582]

WInd-intolerance is not something I have ever heard of. I did experience cold-intolerance when my iron levels were really low. About the only thing I can think of is that there may be some kind of the adverse effects on the skin that hydroxyurea can cause. skin ulcer

nail hyperpigmentation (long-term use)

skin hyperpigmentation (long-term use)

nail atrophy (long-term use)

skin atrophy (long-term use)

scaling

skin CA (long-term use)

dermatomyositis

online.epocrates.com/drugs/...

Perhaps there is something more subtle going on, It may be worth reviewing this with a dermatologist as well as with a MPN Specialist. Perhaps they can shed some light on this.

[Jennytheb in reply to hunter5582]

Hi Hunter, had to laugh, was trying to be subtle but am talking about flatulence, ha ha.

[Inca in reply to Jennytheb]

That reply from Hunter has really given me a very much needed laugh today😂 Yes I know what you mean,Jakafi causes even more wind intolerance😝Keep off beans..........Best of Luck .

[hunter5582 in reply to Jennytheb]

That is hilarious! 🤣🤣 Glad you got a laugh. So you have not been spending time in Chicago. I expect that would be more pleasant than the other kind of wind. Wishing you calmer breezes.

[Minu68 in reply to hunter5582]

Lolol, my fist thought was Chicago too! 🤣

[Mostew]

I understood what you meant to!!! Not often Hunter gets it wrong . First time for everything! Sorry can’t help …

[hunter5582 in reply to Mostew]

FYI - I get it wrong all the time. That is how I learn. I believe that wisdom is knowing how much you do not know. One of the ways we grow and learn is through our mistakes. It is much more fun when our mistakes are humorous 🥴. Much better than the other kinds of mistakes.

[Inca in reply to hunter5582]

Hunter,you made me smile for the first time in weeks of misery.Thanks for that honestly.

I always normally read your posts,lately been to unwell to check in to the site so to laugh was great medicine.

Very Best to you always.😍😍 Sally

[Inca in reply to Inca]

Sorry too unwell....we all make mistakes.

[Wyebird in reply to Inca]

Oh Sally is it your MPN that’s making you unwell?Sending best wishes

[Inca in reply to Wyebird]

Well yes ,the ghastly heat we are having & me being under stress just now was just too much for our maladies & tipped me over the edge.Urgence to hospital ,everything checked I am slowly coming back to life.Thanks for your best wishes I return the same to you.😍

[Mostew in reply to hunter5582]

Oh Hunter , I am so sorry what I said came out wrong . You always have such encouraging words and helpful ideas that inspire us all

Warmest wishes to you

Carolyn

[hunter5582 in reply to Mostew]

No worries. I thought what you said was a rather nice compliment. Wishing you, as our friends in the navy say, "Fair winds and following seas."

[Mustang50]

OMG! I’m totally with you on this one so embarrassing 🙈I’m on Pegasys so maybe part of the condition.

[ChillyAsh34 in reply to Mustang50]

Yes I get it and bloated tummy ,I use probiotic yogurt and stopped eating bread and keep wind causing veg to the minimum it works and tummy a lot less bloated I am on hydroxycarbamide and use gaviscon very occasionally

[Mustang50 in reply to ChillyAsh34]

That’s helpful thanks so much!

[Smudger0122]

Morning JennyHow bizarre, i to am on hydroxycarbamide and some days I find I burp more than others, did start taking gaviscon to settle it. Felt almost like a reflux condition.

With regards to the other end of my body, I've always been a tad windy, before my condition was diagnosed. 🤣

[beetle]

As this topic is often regarded as amusing I am so grateful for your delicate post and Hunter’s initial response as it gave me a delightful giggle amongst the gloom surrounding me at the moment. In answer to the question however I was not aware of Hydroxy causing the problem but it is a listed side effect of Ruxolitinib and also the antiviral that I’m taking. However as we all react slightly differently to meds it is entirely possible that HU is having that effect on you. I hope it settles down without causing you too much embarrassment! Seeing as we all do it I wonder why our society feels embarrassed by it in the first place🤔Best wishes, Jan

[Yvette49]

Oooh 😒 me too, but I am on interferon

[Jelbea]

I only take 500 mg daily of hydroxycarbamide and suffer like you do! Not to be too indelicate it happens me just when I get up in the morning and then I am ready to face the day in a calmer, less breezy manner!!!!

[DottyDaisy]

Oh I am loving this thread !!!Anyway, flatulence. Weirdest thing and most probably to do with my hip hop (oh all right, then, hip op!!) so nothing to do with Peg/MPN.

Had my Bionic hip installed Monday.

Nausea, vomiting and no appetite for a couple of days.

Stopped all morphine and codeine by Wednesday. Since then, just 2 or 3 Paracetamol a day. (Acetaminophen?)

Still nauseous and scarcely eating.

Home Thursday. Slight nausea. Eating a bit.

Friday was Peg day. All as normal. Lots of water no problems at all.

The nausea seems to have stopped but now I'm burping.

Appetite about 30-50%. My daughter has become an amazing vegan cook despite only temporarily converting while she is staying with her mother.

But back to the flatulence. No more nausea, but now I just can't stop burping. That's never been a thing for me. I eat, I burp. I don't eat, I burp. Taking a good Probiotic and ginger.

Nobody on the hip op sites mentions this at all. They are all wonderful with pre- and post-op support around the surgery.

Doing all my post-op exercises religiously but then I suddenly feel light-headed and have to collapse very quickly.

[Minu68 in reply to DottyDaisy]

I had my hip op a year ago, and it really took time to overcome the after op fatigue.... am feeling for you, although its common now, it's still a major operation. Hope your recovery goes well x

[Mica11]

Haha! Made me remember a saying of my grandfather from my childhood. In the Scottish venacular "Whaur e'r ye be, let yir wind blaw free!!!

[Wyebird]

You don’t realise how important your post is to me lol. Since being on lanzoprozile ( sp) I suffer with it then Peg has doubled the problem. 🥴

[souplover]

Hi Jenny,

Yes, I've had the same. After being on hydroxyurea for a few years, I've developed lactose intolerance - and intolerance of some other foods too. The gassiness is probably a response to food you're having trouble digesting. I've had gassiness and some diarrhea. Sorry to be explicit but maybe it helps all of us to talk openly.

I'd suggest to try going off dairy products. There are a few cheeses that are low in lactose or lactose free. Including Parmesan and aged cheddar cheese.

If that doesn't work, then try cutting back on whatever produces the gassiness. For me, that also meant cutting out some vegetables and fruit: broccoli, cauliflower, citrus fruits.

I'm fine with bread. Seems like gluten is not a problem.

Try to experiment and observe. Cutting out certain foods has really helped me with these gastro issues a lot.

Hoping that helps!

[Jellybean129]

Hi Jenny

I have IBS so have been a tad windy for a long time. When I started on Hydroxy I didn’t link the increase in wind with it but in April I was given the go ahead to have a ‘holiday’ from Hydroxy and my windyness (is that a word 😳😂) has reduced markedly. Perhaps there is a link.

Suggestion on diet by others on here are exactly what I would suggest, ie cutting back on cow’s milk (I found I was fine with yoghurt and small amounts of cheese) and avoiding gas-making veggies such as beans, broccoli, cabbage, cauliflower and excess sugar.

I hope you find something to ease things ☺️

Oh, and thanks Hunter - You got me chuckling too 😂

All the best,

Gill

[EssThro]

I think the problem could be gender-related. I have been windy for most of my life, especially after drinking beer, but it has not caused me any real problems. It does seem to bother my wife though.😜

[Jennytheb in reply to EssThro]

😍

[Thankfulone]

Thanks for the laugh! I need to be more lighthearted once in awhile. I take Rux. and have the same problem.

[Borage]

Embarrassing for you Jennytheb. I make a glass of kefir daily which has helped, and cut down on sugar and anything highly processed which pretends to be food.

[hunter5582]

On a more serious vein, yes HU can affect the gut. It made me quite constipated. Much worse when I was also taking diltiazem. That made me wonder why HU would cause that adverse effect. Turns out there may be two mechanisms of action. HU can compromise the intestinal endothelium. That makes sense since it has to pass through the intestinal endothelium to make it into the bloodstream. There is also some literature I read that indicates that HU has some antibiotic properties. The thinking is that it may disrupt the intestinal microbiome. That last bit is theoretical, but would make some sense.

Windy humorous comments aside, these GI symptoms are quite uncomfortable. I hope you find a solution soon.

[Jennytheb in reply to hunter5582]

Many thanks Hunter!