Dietary restrictions.

[Trinigirl]

Hi all. I have been on this chat before. I am an MPN patient with ET and JAK2+. Can anyone tell me if I need to be on a special diet? Over the last year I have gained 30 pounds. I am concern about the weight gain. I must confess that I have not started any exercise programme. Any information will be appreciated. From my last blood work, my platelet level went from 424 to 247. Should I be concern with this drop? I am seeing my haem in a few days. Sometimes I feel he does not give me enough information and I feel as though I am asking too many questions. I did some more blood work today and I am awaiting the results. I do hope all is well with everyone as we battle this disease. Thanks in advance.

[fee13]

I put on 20 pound while on hydroxyurea and have slowly gone back to my original weight after changing to interferon. I don't exercise (but this will change soon) or have a particular diet so someone else will need to offer you better advice.

[Trinigirl in reply to fee13]

Thank you fee13. Appreciate it. I really wish I could go back to my original weight. I have just started a diet and I am hoping it works.

[JenngeetingR828]

Hi Trinigirl,

Crazy coincidence (?) that I too have ET, and Jak2+ and I have put on 40 lbs in the last two years. I’m 48, a former runner and I don’t even know who I am in the mirror! I struggle with hating the gain and when I have asked my dr. If the weight gain is related ... he says no. However, how can you suffer from extreme fatigue at times - daily, bone pain in my legs (calf down) and being told I can’t do strenuous workouts.. and not gain! It’s a snowball that I’m desperate to get turned around. Interested in knowing of others have gained??

[Trinigirl in reply to JenngeetingR828]

Hi JenngeetingR828. My dr told me I would gain weight. I do not really suffer from fatigue because I keep going all day until it is time for bedtime. I have a lot of body pains and the dr is trying to control it with me doing some therapy. Thanks for the response.

[JenngeetingR828 in reply to Trinigirl]

Wow.. this is helpful to hear that your Dr. actually told you, you would gain weight. I sat in my last appointment with my dr. and husband and shared my complete frustration with the weight gain.. and he said weight gain was NOT something that happens with ET, Jak2?? SO .. having gained nearly 40 lbs at this point.. I felt even worse about myself. It has been a struggle. I'm so thankful for this support group.

[Grumpyfairy in reply to JenngeetingR828]

Hi I can’t believe I’ve just found this forum. Diagnosed 18 months ago at 50 with ET and Jak2+, and have struggled ever since. Use to be so fit and energetic, have put on over a stone, which gets you down along with everything else , get so much body pain which I don’t get any answers to. Reading all your posts is a great help to me.

[wendycu]

I’ve had ET and Jak2+ for 11yrs and gained lost of weight. I said it was the medication but as they do the doctor said “there’s no evidence of that.”

2 year ago I told my self. I need to lose weight. I stopped all chocolate, sweets, biscuits and cake. Eat lots of berry fruit. I started to have 5/10 bits of fruit and vegetables a day. I have lost about 3 stone. (Yes I’ve put pounds on and lost pounds but I’ve kept the weight off)

I do lots of walking, nothing else (I should)

After a year of no sugar, I said I was aloud one treat at a weekend, I’m happy with that.

I think your mind has to be set on it to help. I don’t believe in diets, I believe in cutting out things. My husband has now doing the same he lots an stone in 3 weeks. Believe me this is a break through for him, for someone who doesn’t eat veg.

Good luck what ever way to try.

Let me know how you get on.

P.S

Drink plenty of water.

[Trinigirl in reply to wendycu]

Hi Wendycu. I am now cutting out all sweets. That is is problem. the carbs as well. I am hoping for some good results in the coming months once I stick to my programme. I think I should add walking to the programme. Will let you know how I am progressing. Thank you.

[Trocken]

It’s so hard, I have struggled for years and in jan decided to join slimming world, it’s been the best things for me to take control of my diet and start eating healthier, whilst still enjoying a daily treat 🤣 My heamo suggested a healthy balanced diet would do no harm! I too do very little excercise and have managed to loose over 1.5 stone, by eating healthy alone, it’s come off slowly but it’s off and that’s the main thing.

I can’t comment on your drop in platelet count, hopefully your heamo will be able to explain. Are you on any meds?

I hope your appointment goes well xxx

[Trinigirl in reply to Trocken]

Hello Trocken. I am on hydroxyurea. However, I took raw garlic and made it into a paste and added some honey and had that for 3 days just before my blood work. I was told raw garlic helps with elevated platelet. Apparently so because my platelet count did go down a great deal. I am seeing my haemo in a few days.. Thanks for the response.

[Trocken in reply to Trinigirl]

Wow that’s great

[Wyebird]

I would be absolutely thrilled with that platelet drop. It might mean that you could lower your meds. If it continues. Only your consultant can advise you. Your consultant will look at all your blood results.

As for the weight gain mine started when my haemoglobin dropped and as a result of the aneamia I now do little exercise. I desperately trying to change my situation.

Good luck, weight gain is yet another battle we have to endure

[Trinigirl in reply to Wyebird]

Hello Wyebird. Thank you for responding. I did the raw garlic paste first thing in the morning for 3 days before doing my blood work. I was told raw garlic helps with elevated platelet. I must say I feel great inspite of the weight gain and the body aches and sometime I try to console myself that the weight gain is a small price to pay. I will definitely be trying to do something though, about the weight. Will let you know how it is going.

[isimmy]

Hi Trinigirl

I also have ET and am JAK2+. I have been on hydroxy for 12 months and in that time have put on 7lbs. I have put this down to feeling tired since starting the medication and cutting back on my exercise, dancing, as a result. I still have the same diet as before and I think a balanced diet, keeping hydrated and exercise are key.

Since starting on the hydroxy my platelets have dropped from around 825 to below 380.

I don't think you should be concerned about asking too many questions. I am sure that I ask the most stupid of questions at times, but my Consultant always answers them and encourages me to ask as many as I need answers too. No matter how trivial they may seem.

Good luck with your results.

[Trinigirl in reply to isimmy]

Hi Isimmy. Thank you. Will definitely be exercising and drinking more water.

[Swede]

Hi,

Yes,I gained 15 kg when I started with medication,10 years ago (ET jak2+). My doc says that it is quite normal to gain weight with hydroxycarbamide.

Exercise only doesn't make you lose weight but have a look at dietdoctor.com.

Many wise words there...

[Trinigirl in reply to Swede]

Thanks Swede. Will check out the link.

[Superwoman]

Well that is a good reading, you should be happy with that, as for putting on weight I too put weight on to start with, but now after five and half years of being on Hydroxycarbamide my weight has stablized, but I do twenty minuets exercise every day, eat well, lots of fruit, veg, fish, and lean meat, and drink lots of water, also still enjoy the occasional glass of wine. I was at the hospital yesterday, and after my bloods were done, they always weigh me, I am now just under ten stone was over eleven at my heaviest and I am only a midget at five foot tall, 🤪 asked why I am always weighed and my Haematologist said, that the drug can cause weight gain, but he also said I am doing all the correct things by keeping fit and eating well and enjoying life to the full, which when I think before my diagnoses I was very unwell fatigue was a big issue for me and always had something wrong with me, so do not get disheartened it will all come right for you just give a little time bloods are going in the right direction.

Jean

[Trinigirl in reply to Superwoman]

Hello.I thank you for the encouragement. I do hope to change the way and the things that I eat. I do not suffer with fatigue and I am happy for that because I am always on the go. I myself am not very tall five foot 3 inches and I am 158 pounds. I am definitely overweight. Hoping to stick to my new routine. Continue making progress and continue to feel better.

[ksos]

Ask as many questions as you need. Even if your doctor gets testy, remind him or her that you don't have anywhere else to get the information you need and just keep asking. I have ET and have also gained weight on hydroxy that has been depressing. Just recently have gotten just a little more careful about what I eat and added a 20-30 minute easy walk daily (with the help of my wonderful husband) and have lost a little weight and feel a little better. So it helps. There are days that the fatigue is too much, but I do my best, Good luck to you.

[Trinigirl in reply to ksos]

Hi ksos. The weight gain can be depressing but I am making a change with the things I eat. I will definitely have to include some exercise as to taking a little walk. Thank you for the response. Continue to feel better.

[Mica11]

Hi Trinigirl, I was diagnosed ET Jak2+ a year ago now, Hydroxycarbamide made me gain a stone and a half! I was miserable, never having had much of a weight problem and despite doing PIlates and circuit training every week and daily dog walking, the weight piled on. I love scones and grazing on chocolate but when the strawberry season started this year I replaced my 'junk' of choice with a bowl of strawberries and have managed to lose 16 lbs, still about 4-5lbs to go but if I don't lose them I'll be happy to stay as I am....strawberry season is now over though but the habit of junk grazing has been broken, just need to find another fruit for Winter. I still allow myself a bit of chocolate now and again....a little of what you fancy is ok.

[Searcher56]

When I was diagnosed with ET with JAK2+ in November 2016, I went straightaway to see a herbalist friend. She did some iridology on me and told me that my gut is inflamed. She gave me a herbal lymphatic cleanse and told me to go on a diet of no tea, coffee, dairy, gluten and sugar for 30 days. Obviously no processed foods, either. At the time I was nearly 16st and 5'8 tall.

I stuck to the diet and I started to feel better, I have not had heartburn since. And I started to lose weight, I lost 3st in 8 months without any calorie restriction. I also started walking about 40min every day. I am 62 years old and I have been overweight most of my adult life and I have tried many different diets and put more on afterwards. I realised that it is not the calories that make one put on weight, it is knowing what one should not eat. I still have some weight to lose but it is now becoming tough. I have started jogging instead of walking and added some muscle strengthening exercises in my fitness routine.

Essential Thrombocythaemia is called essential when no inflammation is found in the body but it is quite obvious that there is inflammation somewhere when a person is several stones overweight. I have set my mind on discovering where this inflammation is in my body and finding a cure for ET. I would call it "lifestyle" inflammation. I do eat dairy and gluten occasionally and sugar quite often. Maybe I need to go back to being strict again and omit these totally at least till I have lost more weight.