Living with rheumatoid arthritis – saxenda for weight loss

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Three years ago, after a hysterectomy that resulted in complications that I almost died from, I started gaining weight.  I had a mild weight gain in the weeks that followed, but in September or 2017 the weight gain accelerated and I started ballooning.

There was nothing I could do about it.   And please, do not scoff. There was NOTHING I could do.

I reduced my calorie intake to between 500 and 1000 calories per day.  I increased my exercise.  I gained 1kg a week, every week, until I reached 104kgs.  My usual weight is 80kgs.  A weight gain of 24kgs in a matter of months.

My clothes no longer fit me.  I hated what I saw in the mirror.  I became very depressed, and Of course, stupid me, I consulted doctors for what I knew was a medical problem.  I knew what I was eating, and how much exercise I was doing, and the weight gain didn’t make sense. 

Of course my doctors didn’t believe me.  They assumed I was eating Tim Tams and ‘forgetting’ the calories.  Or kidding myself.  Or maybe sleep eating. I shit you not.

Bottom line?  No help from my doctors.  Despite living on a very restrictive, very low calorie diet. Despite having eosinophilic esophagitis that forces me to live on a very few foods, none of which are very calore dense.  My diet is mostly fruit smoothies (yes I know how many calories are in there), vegetables and lean protein.

There is no way I should be 24kgs overweight. I am, in fact, obese.  And I’m very unhappy about it.

I have a history of anorexia with bullemic tendencies.  I have starved and purged when I was forced to eat since my early teens.  I have controlled my eating disorders by keeping my body lean and fit.  Since 2017 I have been unable to burn fat, or build lean muscles mass. 

Over those years there were times when I couldn’t exercise at all, due to my spinal disease.  I had four levels of my spine fused in February 2020, and I have been building up my strength and fitness for the last nine months.  Five months ago I went back to gym in earnest, and I was doing two pump classes, two spin classes and a pilates/yoga class most weeks.

Plenty of exercise. 

I was eating minimal food. 

I am a qualified personal trainer (though my qualifications have lapsed, and I don’t work in the industry).  I have plenty of knowledge about fitness, diet and weight loss.

There is NO way I should be 24kgs overweight.  NO WAY. 

Finally, I found a new endocrinologist.  My previous endocrinologist found a ptiutiatyr tumour, and then immediately denied its existence.  Then she said it was a tumour, but its tiny, a microadenoma, and all my hormone levels are fine.

My hormone levels are NOT fine.

I have low ACTH and what was assumed to be adrenal insufficiency due to years of prednisone use, but actually looks to be from the pituitary tumour suppressing my ACTH production. (ACTH is the hormone that prompts the body to make cortisol and its part of the feedback loop that keeps cortisol levels where they need to be).

Also, while I have had Hashimoto’s thyroiditis for many years, my hypothyroidism is now central, that is, its not a deficiency of thyroid hormones that is causing it, but low levels of the pituitary hormone that stimulates the release of thyroid-stimulation hormone, which stimulates the release of T3 and T4.  The pituitary tumour is the cause.

So no, not normal.

My new endocrinologist asked me what I my biggest concern was, and I told him all about my weight gain and the misery that being obese causes me,

And he believed me.  He believes it is a medical issue.

So he prescribed Saxenda, which is a very expensive weight loss medication.  It is works to suppress appetite and therefore food intake.  It does more than suppress appetite though, and actually increases the body’s ability to burn fat.  

It’s not a quick fix or a magic pill.  You still need to diet and exercise for Saxenda to work.  Most people lose weight, but it doesn’t work for everyone.

Due to the expense, I was concerned that I wouldn’t be able to afford it, even if it did work. But he gave me a sample pack to start, enough to see if it would work.  Also, my GP told me it was just an appetite suppressant, so I felt it would not work for me as I follow a very low calorie diet, with no weight loss occurring. 

My endocrinologist explained to me that it does more than just suppress appetite.  So I decided to give it a try.

I started on 27 October and weight 103.4kgs.

I started on a dose of 0.6mg, with the plan of increasing that dose by 0.6mg every week, unti I reach the maximum dose of 3.0mg. 

The day after the dose I had no side effects. The second day I had some nausea, and stomach cramps.  Then the diarhea began, and the stomach cramps got worse.

Unpleasant, but something I’ve lived with for many years, anyway.  I can tolerate that.  So I continued.

At the end of week one I weighed 101kgs.  A loss of 2.6kg. 

I was thrilled. I haven’t been able to budge a GRAM in almost three years.  Finally, I dared to hope that I have the answer.

I tried to up the dose, as prescribed, the following day.  The 1.2mg dose made me very sick. Incredibly fatigued, nauseous and explosive diarrhea.  The kind that means you need to be right near the toilet all day.  I put up with it for four days, but I coud’t function, so I went back to the 0.6mg dose.

End of week two, I weighed 99kgs.  Under a 100kgs for the first time in three years!!!  Unbelievable!!!

I tried to up the dose again, with the same result. I couldn’t function, so I remained at 0.6mg. I figured I was losing weight on the low dose, so why not continue?

But the weight loss stopped. At week three, I’d gained back 0.4kg, and I currently (three weeks and one day) weigh 99.6kgs.  Week three 99.6kg

So yesterday I increased the dose to 1.2mg.  I have the fatigue, nausea, stomach cramps and diarrhea, but they aren’t as severe. I’m managing.   I want the weight loss to continue, so I’ll tolerate these side effects.  I’m desperate for the weight loss to continue.  I don’t want the first two weeks to be “it”.  I don’t care how long it takes, I want to be lean and fit again.  I want to fit into my clothes again. I want to see myself in the mirror again. I want to FEEL like myself again

Notes about saxenda treatment

1.  The side effects are unpleasant. From reading patient forums it’s clear that it’s a very variable thing. Some people get severe diarrhea, stomach cramps, nausea, fatigue.  Some people get a bit of mild nausea and nothing else.  Around 10% stop due to side effects.  I’m not sure what the exact stats are but most people lose weight, but its slow going.

• Saxenda DOES reduce my appetite.  Prior to starting it, some days I would be hungry and I would fight the urge to eat.  I had the willpower and determination to not overeat.  But now, on Saxenda, its easy. I am rarely hungry. Infact sometimes the idea of foot disgusts me. 

• Saxenda makes you feel full very quickly.  Even when I do eat, two or three mouthfuls of food is plenty for a meal. And I eat one or two meals a day. It is honestly a tiny amount of food, most days.  Even so, if I don’t exercise, I don’t lose any weight.  I had a few days where I couldn’t exercise at all, the side effects were too severe. Which is ironic, the medication to help me lose weight made me so sick I couldn’t exercise, but the point is, I didn’t lose a gram for those four days.  Not until I started exercising again did I start to drop weight again.

• You have too exercise. See above.  Even on tiny amounts of food, weight loss doesn’t happen for me without exercise.  Very light exercise is enough though.  I haven’t been going to gym for the last few weeks. I had an adrenal crisis, then the saxenda side effects, and a few other things happened, and I just don’t feel up to gym. So I walk and jog/shuffle instead.  I am doing the couch to 5km program again, and slowly increasing my exercise.  I do around 30 minutes daily at the moment.  I walk the dogs and I walk and slow jog around the pond.  Its much lighter than my gym routine, and it’s a shorter session. But its all I’m capable of right now, and its enough.  So the exercise does NOT have to be super-hard-intense exercise to enable weight loss.

Other thoughts on saxenda

I’m part of a patient forum where people compare notes on Saxenda.  There is a group for whom the medication isn’t working at all.  But they admit themselves that they are continuing to overeat.  They were hoping that Saxenda would make them more averse to food. I have to admit, that’s how it’s worked for me.  Some days food is not appealing at all, its even revolting.  But its not that way for everyone. Some people are able to keep eating for pleasure, keep eating just as much as before, despite taking Saxenda, and weight loss isn’t happening. 

It’s difficult, because I am eating no less than before, in fact I’m eating a bit more. I’m trying to have a smoothie or an egg for breakfast every day.  Get back into the habit of eating two meals a day.  And I was losing weight in the first two weeks, despite added calories.  For me, saxenda is allowing my body to burn fat which it couldn’t do before I started the medication.  But its not working that way for everyone.

Then there’s another group of people who can’t tolerate the side effects, and the side effects are VERY unpleasant.  This medication has made me very sick!  It’s not worth it for everyone.

I choose to persevere, weight loss is that important to me.  I figure it’s a few months of being very sick, but at the end I will be my goal weight.  How to keep that weight off without saxenda is a bridge I will cross when I get to it.  I am hoping that I can keep my dose at 1,2mg this week, and that weight loss will resume.  Slow and steady.

If the side effects get too much, and I’m too fatigued and nauseous to exercise, or even get off the couch, I don’t know what I’ll do.  Weight loss is the most important thing to me right now.  So being couchbound for a few weeks/months I believe would be worth it, to achieve the weight loss.

I am concerned about what happens when I reach my goal weight.  What if I stop the saxenda and the weight starts to come back on?  But I can’t dwell on that…I will figure it out.

It’s a very expensive medication – around $400 a month – I cannot stay on it forever. 

For now, I’ll worry about all of that when I get there.  I’m going to focus on exercising daily, eating as healthily as possible, and losing more weight. 

I’ll update this blog post with weekly weigh ins.  Just losing a kilo a week would be amazing.  Any more is gravy.  Fingers crossed the higher dose kicks off the weight loss again. This is the most important thing to me, I want my old body back.  Flawed and disabled as it is.  I want to wear my old clothes and feel like me again. 

Have you had any experience with Saxenda? I’d love to hear your experiences. 

Week 4 update

I upped the dose to 1.8mg  and the side effects were ROUGH.  Again.  Terrible nausea, terrible stomach cramps, explosive diarrhea, the kind that means you can’t leave the house, dizziness on standing, and an ‘unbalanced’ feeling when walking.  I couldn’t exercise most days, because I was too sick.  Then, on day four of 1.8mg, I felt better. 

And at the end of week 4 weight in, I was down to 97.8!  Week 4 weight 97.8kg

I had lost almost 7 kgs in four weeks.  Amazing.  And totally worth the side effects.  I’m decided to keep going, and increase my dose to where it should be at this stage – 2.4mg.

Week 5 update

I upped the dose, as planned to 2.4mg, and had no problems with the dose increase.  I was still nauseous and extremely fatigued and plain tired, but it was manageable.  I could only do light exercise, due to the nausea and ‘unbalanced’ feeling.  But that was enough.

On week 5 I weighed in at 95.8kg!   I was pretty thrilled.

Week 6 update

The following week, week 6, I upped the dose to 3.0mg and that was truly a miserable experience.  I became much sicker.  So fatigued, nauseous, dizzy that I couldn’t get up out of bed.  I couldn’t keep any food down, and the diarrhea was constant and just brownish water.  I was dehydrated, and couldn’t even keep water down.  I went into a rheumatoid arthritis megaflare, I don’t know if the saxenda is contributing, but it certainly feels like it’s making my joints and fatigue worse. 

I tolerated that dose for five days, and then I had to stop.  I needed a break from the medication completely.  Week 5 day 5 and day 6 I skipped my dose completely.  Week 5 day 7 I took a baby dose of 1.8mg.  The side effects were tolerable, but I still spent most of the day lying down. I was able to go to the pharmacy and pick up my meds though.  Win!

And at the end of week 6 I weighed 95.6kg.

Only a 0.2kg loss.  200 grams was all I lost during the most miserable, sick week. 

But that’s OK.  It’s hard for me to ‘slow down’, everyone wants to lose weight fast.  And its important to remember that I am barely eating solid food at all.  I have two cups of coffee daily, three glasses of juice, and maybe a boiled egg, or a piece of fruit.  That’s my averyage food intake.  It is a very, very low-calorie diet, and not at all healthy, but I am desperate to lose weight.  I have a long history of anorexia nervosa, and I was falling into that mindset again.

On what I am eating, the amount of calories I am taking in, I should be dropping weight very fast.  But I am not. That’s because I have an endocrinological disorder which means my body doesn’t burn fat easily.  But I can’t let my eating disorder take control of my life again, that’s a whole other kind of misery.

So I need to reset.  Clear my mind.  Remember that while I need to lose weight, I have to do it in a more healthy, more sustainable, way. 

It is week 6 today, and I intend on taking my 2.4mg dose this week.  2.4mg was very tolerable, milder side effects, and I should be able to maintain this weight, or even lose a little next week.  I was aiming for 1kg per week loss, and I didn’t manage that.  But I have to take the long term view – I WILL get to my goal weight, it will just take a lot more time.  And that’s OK.

To get this idea through my head, I have added “its Ok to lose weight slowly, because slow weight loss is healthy weight loss. Slow weight loss is sustainable weight loss” to my morning meditations and affirmations.  I find it helps.

Current weight is 95.6 kg.