I’m a 59 year old woman who has always had weight issues - I know how to put it on and I know how to lose it! Over the past year I have put on about a stone and just can’t shift it despite being in a calorie deficit most days. Since my diagnosis (PV) my diet has improved, I drink so much water and exercise more. It just won’t shift though. I’m only on Aspirin daily. Anyone else had similar or am I trying to find a justification?!
Weight gain ? : I’m a 59 year old woman who has... - MPN Voice
Weight gain ?
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EssexDolly
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Sorry to hear about your weight issues, unless you are on Ruxolitinib it’s not MPN related. Most of us with MPN tend to feel more fatigued and don’t feel like being active enough. I am on Rux which can (but doesn’t have to) increase weight , unfortunately the only solution is more exercising/moving and better quality and fewer calories.
Thank you. I do exercise more and maintain a calorie deficit since my diagnosis but hey ho, it’s likely the joys of being a menopausal woman!
I cut out sugar & carbs occasional treat. Dropped dairy & red meat . Meditteranean type diet worked for me weight drops off & stays off but I do walk daily & on Interferon 👌. Hope you get there . Julia
I used to be overweight and staying in calorie deficit never worked for me. What did work was avoiding all refined carbohydrates, especially sugar. Not quite a keto diet but fairly close. While exercise is very important for health, I don't think it has a huge effect on weight unless it's excessive, and I don't think any of us have the energy for excessive exercise!
Thank you - I think you’re right - cutting refined carbs somewhat may help. Going to give that a try.
Yes I find the same, keep the sugars down and refined foods. Exerting too much as a menopausal woman isn’t ideal either as so much is going on in our bodies at this time. Dr Wendy Sweet-Smith has a website - mymenopausetransformation.com
With lots of free info based on science and research for women going through peri menopause, menopause and post menopause.
She’s very helpful. She does have some programs tho do look at the amazing info free on her blog 👌🏻
Best wishes 🌸
I agree with your diet views but I think any exercise helps, okay it doesn’t directly burn as much calories as we would like but exercise increases metabolism which can last for hours afterwards which burns calories faster , also exercise builds muscle which burns more calories and many other benefits. What really surprised me is how much difference it makes to my weight if I do some exercise before meals, since adding in 5 minutes of stair climbing before breakfast I lost faster. I also do some exercise before lunch eg 20 mins fast walk and similar plus light weights before dinner. I am on high dose Rux so have to be careful as weight can go on easy if I let it. I get it some of us are able to exercise more than others but any is better than none.
Yes, I agree that exercise of some kind is hugely valuable, essential even, and probably does increase metabolism. Personally though, I have no interest in calories since reading a lot about nutrition several years ago. The body treats different macro nutrients in different ways and I can eat a fairly high fat diet and maintain a healthy weight. Obviously, my weight has been all over the place recently, the worst part of which was extreme underweight. My transplant nurse told me not to worry about healthy food and just eat anything I could manage. I'm back to normal eating now, but kind of missing the cakes and biscuits!
Much harder to lose weight post menopause 😏
cutting out ( all) carbs and all sugar will make a big difference. Eat plenty of healthy fatty meat,eggs, fish especially oily fish, veg that grow above the ground. Try eating only 2x a day not 3 , so you are reducing the hours you have food in your gut. Gives your liver a chance to do its job better. Olive oil, coconut oil and butter are healthier than the highly processed vegetable oils like sunflower. Most fruit has too much sugar- berries are much lower in sugar and are cheaper bought frozen. Lovely with a dollop of cream. Hope you don’t have any food intolerances?
Best of luck. People usually see results very quickly. Brings down your blood glucose which is then beneficial to insulin levels and helps reverse any insulin resistance.
I found your suggestions very helpful for me too . Thank you.
Also meant to say nuts and very dark choc - like 85%, make good choices for snacks.
I’m currently doing a big delve in to diet and what are the metabolic drivers of our particular condition. Glucose is a known driver of all cancers so best to avoid it as much as is possible. That’s a no brainer. But there are other drivers which I am trying to understand better. Once I have it in some kind of logical order, I will post here as I’m sure others also have greater knowledge and experience with it to add to the discussion.
I have to admit before diagnosis, my diet wasn’t the best. Had a very sweet tooth and we have lots of diabetes in the family. I was never overweight so thought I was fine. That’s a myth as insulin resistance occurs before signs of diabetes. It’s a shame that this isn’t tested for , along with vitamin and mineral deficiencies. I had clear vitamin deficiencies of B12 and vit d . Probably others too but these aren’t tested. I have read that for your body to metabolise 1 molecule of sugar it requires 54 molecules of magnesium. What else is required to process sugar? 🤷🏽. Minerals are stored in your bones.
It’s a fascinating and deep hole looking into diet and health. Lots of conflicting ideas too.
Xx
Hi, it’s very interesting reading your reply, thank you. When you say cut out (all) carbs I am assuming you mean bread, pasta, rice etc? and not veg that contain carbs? I am keen to try this but wonder what you replace the carbs with? Thanks.
that's includes root veg, especially potatoes/ parsnips. Veg that grows above ground are less starchy.
With carrots, I have read many people with cancer juice these, with an apple, celery and beetroot. The whole thing is a bit confusing and what works for one may not be the right thing for someone else. I would definitely avoid potatoes though, delicious as they are.
You can make cauliflower or broccoli rice, courgette spaghetti . I have used cabbage leaves instead of pasta in lasagne. There are alternative keto recipes for bread if you really miss it.
May be helpful to get a glucose/keto monitor . Then you can really see what effects certain food have on your body.
fasting is also supposed to be very helpful, whether its a 1 day fast, or intermittent fasting etc. So much to learn!
Anything brown is healthy in moderation whole grain brown rice . Granary or brown sourdough bread but a couple slices per day not a loaf 😂.
Chocolate's brown... 😁
Ha yes Dark is better 😂👌
I've switched to 2 meals on the days I was taking Hu.It seems to do something
Good points, although some people can be okay with no carbs apart from veg some can’t, I think a little carbs are likely fine if one exercises, BUT, no refined carbs or sugar unless as a special treat, I eat some carbs such as sweet potatoes but no more than needed, if weight creeps up I cut back the carbs, plenty veg, protein and enough healthy fats including some nuts and some oatcakes., some berries.
I’m the same, I don’t eat as much as I used to, especially with my swollen spleen. Rarely have a dessert, don’t have anything fried, do an hours aqua fit five times a week, calorie deficit but gain weight constantly. I’m probably going on Rux, which, apparently, can cause weight gain. Oh the joys! I’m trying to lose weight to help my arthritic knees.
hi I am on hydroxy for et jak positive and have put on weight over the past few years, I have tried all types of diet but find it very hard to shift the pounds I am at present doing a low carb and low sugar diet along the keto lines 3 weeks into it now and down 5 pounds . I am 64 and had an early menopause starting in my mid 40’s. I am quite active minding grandchildren and doing my x trainer when I can. I have always had a weight problems and struggled to keep the pounds off. I will continue with this diet for another week and see how it goes. I know what your going through it can be so hard at times to stay positive.
Good luck hope you find a healthy eating plan that works for you.
Since I started on Hydroxy in April this year I have put on about 4kg in weight. Every other aspect of my lifestyle in terms of diet and exercise has been the same, except for giving up alcohol so I thought I would have seen some weight loss rather than going the other way!
I can’t say for definite that the hydroxy has caused it but it’s the only thing that has changed. I have started to up my exercise levels to see if I can get back to where I was pre-medication but so far no noticeable change.
Hello Essex Dolly I feel your pain! I’m 56 years ( Young apparently!) old . I too have gained over a stone in a year. I have been on Rux for that time too. Personally I feel it is my lack of exercise ( & not being able to) that is my main problem. I used to be strong especially my upper body & fit.
I have MF since Nov 21 and have a lot of breathlessness & the fatigue, that most of us MPN’ - ers endure! Iam vegetarian, need to cut out more dairy. I totally agree sugars do feed cancers & increase inflammation but it is easier said than done. Life has to have some little pleasures too ( I believe!)
My consultant suggests pushing through the fatigue. We are looking at getting a good quality piece of exercise equipment for the family indoors?. I have an electric road bike which is good but used infrequently because of my symptoms. The most annoying thing is having to buy bigger sizes of clothes or squeezing into my coats. ( that I like!) I have an enlarged spleen too! I’m 5ft! - some days you don’t feel good not just because of the MPN! Hey ho!
We have to be thankful for each new day - & take the positives where we can 😊
Live Life , enjoy 🍁🐿️🍂🌲🦔 & good luck everyone!
A question, if you don't mind: apart from having a scan, how do you know you have an enlarged spleen? Over the last couple of years, I lost a bit of weight but now my stomach is annoyingly large.
Hello. Yes my stomach is also annoyingly large! The main factors with an enlarged spleen ( certainly in my case with the MF) are the feelings of fullness after small meals. Not being able to eat a great deal at once. Then the stomach - Intestines etc have less room to be!
A side effect of Ruxolitinib for me is anaemia and as I have been led to believe the spleen then enlarges to create more red blood cells that the bone marrow cannot because of the scarring with MF. All significant factors apparently!
I can eat as much as is put in front of me mostly, but I can eat smaller meals and still feel full enough. I have MDS so anaemia is the default for that and so your mentioning the bone marrow might mean my spleen is enlarging. Thanks for the very clear explanation.
I can eat as much as is put in front of me mostly, but I can eat smaller meals and still feel full enough. I have MDS so anaemia is the default for that and so your mentioning the bone marrow might mean my spleen is enlarging. Thanks for the very clear explanation.
A haematologist can examine you. They obviously cannot tell you the exact size but can definitely give a good indication.
Thanks, Otterfield, I had a scan some time ago and I have one kidney smaller than the other, cysts on my liver, but nothing mentioned about the spleen.
Hi, do you see an MPN specialist? Even if you don’t (it’s best to if you can) the person you see re your MPN should regularly feel for enlarged spleen - my specialist makes a point of seeing me face to face once a year to do this. A simple scan/ultrasound can give accurate measurements if needed xx
Hi Raz, Yes, I know I should see a specialist and I don't know whether my consultant is a specialist or just a haematologist. Face to Face hasn't happened for many people since covid and I have too much to do looking after my partner to make much effort at the moment to drive a long distance to see a specialist. I live a long way from any motorways. I need to ask the Macmillan nurses about my hameatologists qualifications but that's not urgent. I think my stomach is probably my intestines protruding after a meal. I'm sure eventually I will have a scan again. They do look after me quite well.
Hi I echo all above. I finally got a grip on diet by following Glaucous Goddess. I am aware of the criticisms of her. I have changed breakfast to eating veg and protein (and a small slice of bread) and it has altered something. Prob lack of sugar am. I follow some of other 'hacks' but the shift to the veg/protein breakfast has been the winner. I lost 3 kg in 6 months. Slow but fine. I exercise but.. also below pre diabetic but watching it carefully PV 2005 Pegasus 45 every 10 days.
That’s interesting re your change in breakfast, what kind of veg/protein do you eat now v. before? I haven’t heard of The Godess you are following but if it works for you and is healthy, why not! X
The book gives lots of options like poached egg avocado toast. I like smashed peas and poached egg on toast. But my favourite is shabshuka. This is a mildly spicey tomatoe sauce and I add peppers, mushrooms, blacked eye beans and lots of whatever is to hand ie celery, carrot. I make it and freeze it in batches. I heat a small portion each morning, add maybe spinach or last nights left over veg, put on toast with the inevitable egg or cheese. This has stabilised my blood sugar levels and I can get through to around 12 (from 8am). I used to have toast and marmelade. then an hour later porridge, and still feel faint by 12. There are other adjustments but the breakfast is great. If I am away in hotel I try to have bacon, egg, mushrooms, beans. if with friends I have their ratatouille. I would like to find an alternative to the tomatoe base but no luck so far. Hope this helps.
Hi Essex Dolly,
I am going to be controversial here, and disagree with a lot of the answers. From my experience, cutting out huge swathes of food categories just made me miserable.
I have found over the years , that eating 3 meals a day , (including a little of what you fancy…ie) the so-called “bad-stuff” in moderation)… at very regular times, and nothing after 7-8pm seems to keep my weight stable.
Having said that, I don’t eat ready meals or crisps and don’t drink alcohol or any fizzy drinks…I do however, have a small pudding twice a day after lunch and dinner.
Another trick, which you probably already know..is to use a smaller dinner plate…so that it looks fuller than a large one, and also , not to use your phone or tablet whilst eating…otherwise the food just goes in without you appreciating it !
Good luck with whichever way you choose.
Yes I am with you on that I cut out sugar etc but odd treat of almond croissant or Indian meal once a month is bliss . Skin & energy & hair better on improved food. We don’t call it a diet it’s actually sensible eating that most of us got out of at times in our lives . 😂. More energy comes from better food choices 👍
I am on peg and aspirin and have put weight on. Maybe since you are only on aspirin it’s the aspirin😂only joking! I thought it might have been the medication but maybe it is our condition
Not Peg my weight came off after changing to Med diet & low carbs . And more walking than I ever did daily 👍
I lost weight on Peg purely because I was so ill on it that I couldn’t eat!!
Hi. I am very similar to you, though I have ET and take hydroxy. My GP is very supportive as I am on painkillers and other tablets that can cause weight gain. I feel very frustrated as I think the extra weight invreases the pain. After consultation with GP who consulted specialists and others I have embarked on Michael Moseley's 8 week blood sugar diet. Basically similar to Amethist's suggestions. It is quite drastic as initially it is 800 calories a day, cutting sugars and most carbs. At the end of 8 weeks it then goes to 2 days a week on 800 kcals and a mediteranean way of eating. It is important to consult your health team though. In 2 weeks I have lost 17lbs, my stomach is less bloated and I generally feel brighter. Good luck.
Hello
I have PV and on Hydrea. I am 72 a runner and keep to a strict weight training routine . I gained 4 lbs and no matter what I did could not get the weight off. This is after starting Hydrea. Finally it came off after 4 months of intermittent fasting faithfully ! I did a no eating window from 7 pm until 3 pm the next day. No snacking or cheating at all!!!!!!
I was thrilled
Good luck don’t give up!
Change from HU to Interferon & it worked . 👌.
Hi I too have had issues all my life. Always on a diet. My medication has made no difference.
Last yr I was told I’m prediabetic and went on a zoom course to try and reduce my levels. It was amazing. So interesting. I’ve changed my eating habits and yes as usual I’m still on a diet. Apparently you can refer yourself if you are over weight.
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