Ozempic for MPN Patient's Unable to Control Weight Gains Conventionally?

[socrates_8]

Evening all...

From sunny Sydney town, (way down under)...

Guys, just wondering if anyone over there has had any experiences with 'Ozempic' for weight loss while treating their MPN?

From all I've read, there may be any number of good reasons why this might not prove to be a useful suggestion...

... However, recently a good friend & fellow elderly MPN patient I know, who has not long ago commenced taking Rux' has gained so much weight that being mobile has become far more challenging, and suspects that their accompanying 'Shortness of Breath' might also be another side-effect...(?)

Obviously, I've suggested first talking with their MPN specialist for guidance & perhaps their GP...

Nevertheless, I simply thought I'd ask the question here to see what responses if any I might glean...

Thank you all, pls stay happy, healthy & safe...

Steve

[ainslie]

personally I am sceptical about these weight loss drugs, there may be problems with sides now or later, secondly gaining weight on Rux is fixable by the normal natural methods ie less and better quality calories and or more exercise. It’s the same principle whether one is on Rux or not but I agree it’s a bit harder on Rux. Most people on Rux will gain weight if the continue the same diet and exercise amount they had pre Rux, but with some diet modification and more exercise weight gain is not inevitable. I am on high dose Rux 22.5+20 , my weight is same as when diagnosed 14 years ago, since starting Rux I improved my diet but still eat 3 large healthy meals a day, I’ve always exercised and continue with that.

[socrates_8 in reply to ainslie]

Hey ainslie...

Thanks for your reply also... Yes, I must work very hard myself, in just the way you've mentioned...

Unfortunately, that more natural solution is not always available to all people. My friend is one of those people who feels exercise is no longer possible...

My own experience is that to actually lose weight on Rux' the exercise level needs to be intense. After a 20 wk recovery, (from being run down on my bicycle). Rux' delivered all of weight back most swiftly, (& then some). Between my very strict diet and loads of calorie burning aerobics... It's a very slow progression. Howeverr, I shall persevere...

Anyways, thank you for your response...

Best

Steve

[ainslie in reply to socrates_8]

I don’t think the exercise needs to be intense, my heart rate rarely goes over 100, what it does need is regular, even better before meals, I do 5 mins stair climbing before breakfast, 15 fast walk before lunch, 20 minute fast walk plus 35 mins light highish red light weights before dinner, works for me and should work for most if they can and want to exercise

All the best

[socrates_8 in reply to ainslie]

Hi ainslie...

It may not need intensity in your own case... However, and in mine, it was essential, in my view...

Consistent exercise in most cases is a very good thing for all people for a plethora of reasoning...

Nevertheless, if one truly wants to counteract the effects of Ruxolitinib's weight - gaining propensity, then an 'Anti-Inflammatory diet' & 'Intense aerobic' exercise may be the best solution.

Once again however, such regime's will not work for everyone, again for a myriad of reasons...

Hence, my original question's as to MPNers experiences w/ 'Ozempic' if indeed there are any to mention(?)

Best wishes

Steve

[Miriammusic in reply to ainslie]

Yes, I totally agree with Steve. As we say frequently on this site, every body is different. I eat well and exercise, and still put on 15 pounds thus far on Jakafi. I did not continue with the same diet and exercise program I had pre-Jakafi, and yet still gained. My doctor has indicated there is research on leptin signaling being affected as well as an impact on cytokines and inflammation. If exercise and diet control is working for you on Jakafi, that is great, but it is not a formula that one can guarantee will work for everyone. Steve, with my oncologist's approval, I just started on Tirzepatide three weeks ago. I have already lost 6 of the 15 pounds. Feel much better.

[ainslie in reply to Miriammusic]

Yes we are all a bit different but the bottom line is calorie consumption and calorie burning. To take it to the extreme if a patient on Rux went on a hunger strike they would lose weight, it’s the calories. Yes harder on Rux but the basic science is the same. I know it’s hard , I have been on Rux 7 years , I can put on weight quickly if I allow it , I am just back from 2 weeks holiday, let rip on the diet and plenty time on the beach and put on 6 pounds. It will come off again. The two things I found that made it easier for me is exercising before breakfast, it revs up the metabolic rate, the second thing which made it a lot easier is reducing wine by a bottle a week, ie 1000 calories. I went to Spain on holiday for 7 weeks and put on 12 pounds due to sloppy diet, it’s the calories.

If people chose the drug route that is of course their business and I know people won’t like hearing this but any switched on doc will tell you will lose weight if you eat less or better calories and or exercise more depending on how much you reduce the calories or increase exercise. Sorry , I wish it was easier.

[socrates_8 in reply to Miriammusic]

Hey Miriam...

So cool that's working for you too... So, I am guessing that "Tirzepatide" is yet another alternative to Ozempic (?)

Please do keep us all informed as to how you progress Miriam...

One of the problems my elderly friend also suffers from is 'A-Fib' & was a tad concerned that these weight loss solutions may potentially create a negative impact in that direction also(?)

Have you , (or anyone reading), heard anything along those lines? If so, pls do let me know...

My GP has offered me "mounjaro" but it's a tad expensive and the price apparently escalates as one progresses etc... (In Oz of course...). ;-((

Anyways thanks to all for your ongoing contributions...

Best wishes

Steve

[Kati365]

Hello Steve,

I don’t often contribute to the conversation here though do quietly appreciate the support offered on this forum.

I was started on Ruxitinib last December and in three months put on a stone. This was ‘the stone that broke the camel’s back’ so to speak as I have struggled with weight control for many years alongside leading an active lifestyle, doing lots of exercise and having a healthy diet- clearly my calorie intake was greater than what my body needed.

To cut the long story short, struggling with the new weight gain I was desperate to take action. WW and sensible reduced calorie diet got me nowhere and I was seeing multiple reports on the weight loss injections. They were not available on the NHS (UK), so I went about to privately obtaining it: I chose Mounjaro, later confirmed as a good choice with weight loss in mind - I am not diabetic, don’t do sugar.

Since May, I lost 15 kg (2.5 stone). GP and hematologists are aware and have not objected. The way I look at it is that these hormone analogues kind of correct an imbalance of appetite and metabolism controlling hormones that some people who struggle with weight suffer from.

I’ll be happy to reply to any further questions if that helps.

Best wishes,

Katie

[light in reply to Kati365]

Good for you Katie.

[socrates_8]

WOW! Thanks so much Katie...

Yes, I have also heard of "Mounjaro" as an alternate... The problem here in Australia is that one MUST be diabetic to become approved for a prescription. Unless, one buys 'Off Label' through their own GPs...

However, also in Oz, GPs are generally being discouraged from doing so, as there appears to a growing 'Global' shortage with this drug too...

Nevertheless, thank you and I'll pass on your message reply to my friend & others in Oz who are also struggling a tad with general weight issues while undergoing treatment for MPNs...

Best wishes

Steve

[william-Indo]

My personal logic is what is in < what is out.No matter what meds we take, it follow above rule.

I just do Keto diet and intermitten fasting (18/6) and fast walk for an hour,

The result is fantastic.

Cheers

[socrates_8 in reply to william-Indo]

Hey William... (Apa-kabar saya temu)

Unfortunately, my friend, all of us have a diverse range of metabolism in our body-chemistry.

Hence, for some, calories in vs. calories out is a simple enough equation... But Med's like Rux' make many of us gain weight, and very fast too...

Thanks for your input...

Steve

[ainslie in reply to socrates_8]

Steve

Fast or slow metabolism it’s still calories consumption that’s puts on weight, Rux makes it harder but calories are calories

[socrates_8]

Very true ainslie, Rux' can me the equation far more challenging!

Best

Steve