I think I'm on the lowest dose of hydroxy now (500mg daily) as my platelets have been normal for over 6 months. My biggest whinge are too my all too frequent headaches (usually the nighttime /aka hypnic variety) and dreadful bloating + water weight gain. Calorie resrictive diets are ineffective.
I'm seeing my haemo in 2 weeks time and I'll ask if there is an alternative, though I suspect there is none in Australia.
I've saw a neurologist before the hydroxy regime started, but it's a mystery whether the headaches are related.
Hi BobbyI know this might sound mad - have you tried a gluten free elimination diet? Gluten gives me headaches and bloating. Try just eating salad veg nuts fruit and chicken ( organic chicken if you can) for 2 weeks. You should know then if it’s working. If nothing else you might lose a couple of pounds Louise x
Not mad at all, my friend. I'll substitute the chicken with tuna and eggs (I'm lacto-ovo vegetarian). Thanks for the tip. I'll post back here in 2 weeks and let you know. Cheers!
I've already researched gluten intolerance and will bring it up with my GP at our next chat. I suspect the 2 week trial will be a useful tool to expose some home truths. By the way, I'm on the east coast, in Yeppoon (near Rockhampton if you want to Google it). Cheers! Oh.. I'm 70 in 2 days...whooppee
Interestingly I also got rid of water retention a few years ago by cutting out grains. I was also on Hydroxycarbamide at the time but I don't know if there was a link.
Glad you have a few suggestions I was on hydroxi for 6 years and suffered weight gain but think it was related to fatigue and little exercise.
Hi Bobby lm also on lowest dose of hydroxy thank heaven higher doses not for me. My weight gain has been severe especially over lock down period here in uk. You don't say how long you have been taking hydroxy lm into my third year and its only now that l can manage awful headaches. Occasional phlebotomys help me alot as l have PV. I have started a vegetarian plan to help with weight loss as l was begining to look like a whale. Anyway take care hopefully you will begin to feel better but it's not an easy ride. Also give alternative meds,herbs,vitamins l swear by magnesium and no booze whatsoever.Take care and stay positive things can and will improve.
Adiewon
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Hi Adiewon,Sorry I missed the bit about time. I've been on hydroxy for 18 mths now and platelet have been normal for about half that.
Really crossing fingers that a better diet strategy will help rather than a change in drugs as I don't think it's the hydroxy. I had bad headaches that would wake me in the early hours of the morning long before I started the drug. The bloating just got worse with age , carbs and the chemo drug.
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Hi Bobby l felt the same and l have to say l have been unwell throughout most of my life and l have the sense had l been fortunate to come across a medic to focus on my blood work and symptoms l would have been diagnosed as a young person. Anyway it's water under the bridge now, but there will always be times when my PV/ET kicks in and l feel poorly again,pain in stomach,chronic inflamation,tingling and burning skin sensations and yeh really lousy headaches. I manage these painful symptoms through my food,vitamins paracetamol and cocodamol when it's bad during the night l have a prescription for low dose codeine which knocks me out. I hope this helps, l was diagnosed 3 years ago and began on quite a large dose of hydroxy now l take 500 mg daily (as much as l can tolerate) and phlebotomys when necessary, it's true to say things have improved for me and now it's just a case of being proactive about my meds and my own self care.Take 222Bobby and good luck
Adiewon
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Hi Adiewon, I hope you continue to improve healthwise. Sound like your medic is on the ball. All the best.
Hi BobbyDon’t know that area of Australia - family near Sydney and Brisbane although at my ripe old age unlikely to visit again - too far!
In my experience gps know little about food and nutrition. I was sent for a coeliac test which of course was negative. In the uk not all types of gluten intolerance are tested for, nor show up in tests.
In the end I asked my gp to refer me to a psychiatrist. When he asked why I told him “ well I m clearly imagining things and hallucinating. I know I m blown up like a balloon and have 24 hour headaches but you can’t find anything wrong so I m obviously in need of psychiatric help.”
With that I left ( gp open mouthed) and became my own project manager. I don’t have a lot of time for gps as you can tell! Gp standing for generally practising - on all of us…..
Hi. I saw your post. I'm on 500 mg hydroxy a day and a 75 mg aspirin. Ive noticed headaches and weight gain and have started a low carb high protein diet = helping with my weight but due a blood test soon to check platetlets. I have ET. stick with the diet. I;m hoping that if I lose weight I can reduce the hydroxy. good luck
I also suffered from bloating & headaches prior to mpn diagnosis. As there is a family history of food allergies & intolerances I tried cut out gluten for a trial period & both the bloating & headaches disappeared. My GP just accepted & noted I am gluten intolerant on this basis. I have since been tested for coeliac (an autoimmune disease) which came back negative.
Thanks for all your replies ladies.Loubprv - We used to live in Brisbane, but it's way to busy down there for us now (moved up this way in 1986) Agree GP's aren't too interested in ladies 'weighty' issues. I've been to dieticians...not much help there either. In the end you use the web to find your own cures. I think I have gluten intolerance and will subscribe to Dr William Davis Wheat Belly regime.
The Hydra could have something to do with it, but I doubt whether my haemo will endorse it. Cheers for now!
summerdown-
Sounds like you're on a similar path to me (or one I will be on soon once the new plan kicks in). All the best!
Devilgirl -
Bloating and headaches - so happy to hear that these disappeared when you cut out the gluten. If you're not coeliac, then perhaps just gluten intolerant, which I understand is more common.
I was never sure if my weight gain was due to HU or my increasing age. All the time I was taking HU I did struggle to maintain my weight. Interestingly, I've been off HU for 4 weeks and I've lost 2lbs without trying to. I still feel bloated though 😬
Hi Cakeface,Perhaps your GP has told you to drink more water (supposedly to keep the puffiness/bloating at bay?) That's what I was told, but it didn't help. I'm about to embark on a diet change rather than a med change because I know I'm on the current hydra dose for life (500mg/day).
Keep well and don't lose too much weight
😜
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Hello Friends,Still chasing the magic solution to my chemo belly...grrr! I'm so weary carry around a balloon in my tummy at day's end. I'm trialing the extremely low carb Wheat Belly diet at the moment. Also drinking 2lt. water /day. If I have no or limited results, my back-up is a researched Chemo Belly plan. It's much kinder re carb allowances. I see my specialist next week with some new blood test results, so will let you know. I don't want to change meds and I know my chemo specialist isn't too sympathetic to weight gain, so I'm jittery about bringing it up.
Sorry about your un-sympathetic specialist. If the belly is causing you stress it is a relevant condition. You might ask whether Dr is concerned abut your stress level, or note that you have been stressed. This could lead into discussion of your concern.
Thanks for your concern and support, EPguy. True, stress does not help any condition, so I may pluck some courage and bring the subject up. I suppose if I mention my almost nightly waking headaches (aka 'hypnic' headaches - for which I take Topiramate) they will not receive much comment either. I believe they are may be connected to ET, even though they started to be a problem before official diagnosis of ET.
The other question to ask you Dr is alternative meds, interferon in particular. It seems you are having trouble with HU tolerance in more than one way, and that should be a reason to have access to Pegasys or Besremi.
I also gained a bit of belly on HU, in my case it was minor, but on a skinny guy I noticed. On Besremi it is less an issue. More importantly I feel generally better on Bes, but it's not been all easy either as I get used to it.
Will do, EPguy. Not sure it its avail for us here in Australia and on the PBS. Headaches can be controlled on a different medication, namely Propranolol. I was trying to figure out which med was causing the weight gain /bloating. The Hydra is looking more obvious after some basic web surfing.
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Looks like Pegasys is on our PBS..a bit more expensive than the Hydroxy (AU 42 for 4 syringes) and I's have to self - inject. Thanks for the heads up and I'll speak to the specialist next week.
Update... So I saw my specialist yesterday and platelets were a bit up (330,000) but he said that was fine, considering my 'young' 70 years. No chance of a different medication and the tummy bloating wasn't significant to him after examination. (I guess it's a women's thing!) Of note was that there is no connection between my hypnic ("alarm clock") headaches and ET, so I'll tackle the meds for that with the GP. I've been having those for about 3 years and finding the right meds is a challenge! I've found a few good websites re diets while on chemo drugs and have been implementing those. Metabolism, I believe , slows and we do need to adjust calories.
Wishing you all a great day!
Bobby's mum (Bobby is waiting patiently to go for his morning beach walk)
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