Have you or a loved one faced unintended weight loss due to PH?

[Sally Hoffman]

After being on Uptravi for a couple of years I began having  diarrhea on a daily basis.  At first we were not concerned as diarrhea is a side effect of Uptravi in some people.  However, I began losing weight and was becoming frail.  My primary care doc had me take several, not so common,

blood tests and determined I was no longer making digestive enzymes and therefore not getting nutrients from my food.  Caused by Uptravi?  I began taking Creon before every thing I eat and I am now slowly gaining back the weight I lost.

[jen-cueva]

Hi @mainegal, I hate hearing about your complications and weight loss with Uptravi. How long were you on it before you began to notice this? Yes, diarrhea is a side effect.

I’ve not heard of the issue with digestive enzymes as a side effect. I began Uptravi shortly after it was FDA approved. I was on Ornitram and had horrific GI side effects so a bit of diarrhea never bothered me. But I, too, have lost a little weight since starting it in 205 or 2016.

How long have you been taking CREON? Thanks for sharing this, as now I feel like I need to research this more. I’m grateful that it is helping and that your PCP decided to do the bloodwork.

[Sally Hoffman]

To answer your question Jen, I began taking Uptravi around late 2019 or early 2020.  Weight loss initially was very very slowly as another side effect is lack of appetite.  I really can’t say when the weight loss began to be a problem.  I just knew I could eat whatever I wanted (low salt) and not gain (yea yea) but the problem was I didn’t want to eat.  Never had that problem before.  I’ve been on Creon for about a year now.  Does anybody else take Creon?  Like all the other PAH drugs the beginning was a rough road, but eventually  dosage adjustments fell into place and I began to feel better.

[jen-cueva]

Hi @mainegal, thank you for your quick response and the update on your digestive health. I’m grateful you are doing better and gaining some of the weight you lost since starting it.

I’ll share this in another topic about Uptravi to see if anyone else has had this issue. Have you had any problems with your blood sugar since you started taking CREON? I read that was a common side effect.

Sally, I will tag you in the post I share this in.

[DeLois Tweedy]

I too struggle with unintentional weight loss. It is frustrating because no one seems to know why. I am not on meds with weight loss as a side effect.  I do have many heart problems and PH. So I often wonder if it just goes along with my health problems.

I never weighed much up through high school and after the birth of my first child, I was back at my usual weight. Through the years I maintained a weight that was normal for my frame and height. In 2020 when I had a heart attack, had a valve replacement (TAVR), was diagnosed with heart failure, valve disease, and PH, my weight started to drop and has done so steadily.

I have always eaten a healthy diet, and it has become even more so since my diagnoses. I try to eat a low-fat, low-sodium diet with few meats, so I’m sure that plays a part in keeping my weight down. My worry is that I continue to gradually lose weight. I also worry because I know I’m losing muscle too.

[jen-cueva]

Hey @deetweedy, sorry to hear about your unintentional weight loss. I can’t recall the meds you are taking, but so many cause nausea, diarrhea, poor appetite, etc, which could lead to unintentional weight loss.

You mention your healthy diet, but I know you did that before PH. But have you ever used Ensure Clear drinks that are more like juice? I wouldn’t say I like Ensures and Boost but I didn’t have as much of an issue drinking Clear Ensures juice when hospitalized.

Maybe toss some low-fat ice cream or frozen yogurt into the blender with the regular ones such as Ensure, Boost, and even Walmart has its own Equate versions, too. We used this on patients who weren’t eating much, and they enjoyed their milkshakes.

If your weight loss continues to be of concern, speak with your HCPs, and maybe you can talk to a Dietician or nutritionist.

[DeLois Tweedy]

I have a long list of heart meds, including amiodorone, potassium chloride and metropolol, and of course lasix. I also take synthroid and Prevacid.

I have not had an appetite for quite a long time, but I do eat at meals. I like Boost but not Ensure. I have not tried the Ensure Clear, but will try it. I mostly use nonfat Greek yogurt in smoothies, etc. I worry abt too much fat because I have CAD,  even though my cholesterol  and LDL/triglycerides are not bad, and my HDL is very good. It is thought that the CAD was caused by late effects of radiation treatments. I am on a statin med for this (which I dislike taking statins).

[Colleen]

@deetweedy my son’s heart was in very bad condition once he was finally diagnosed with PH. As time went on he really struggled to keep the weight on. He was in right heart failure and forcing himself to eat was a real challenge.

I don’t know if you have other health concerns that might restrict the following suggestions, so please keep that in mind.

Cullen’s PH nurse recommended snacks high in calories in addition to the supplemental drinks. Snickers Bars, Peanut Butter, smoothies with extra calories added, and high calorie health bars.

I remember he would get excited whenever he gained a few pounds but he seldom received credit for it. He was often told the extra pounds was fluid retention. Do you find yourself running into that too?

[DeLois Tweedy]

Colleen, thank you for your response with ideas to help with unintentional weight loss.

I have right sided HF, restrictive cardiomyopathy, and my septum is very thicken (from radiation treatments), making me very high risk for mitral valve replacement, which I need very badly. I have such a long list of heart problems along with the PH. I have researched cardiac cachexia, and wonder about that…..

I have been drinking Boost and plan to try the clear Ensure that Jen mentioned. I get healthy fats daily in my diet. I make smoothies (usually with fruits and Greek yogurt), but have a peanut butter chocolate chip one that I really like.

I too will gain a pound or pound and half, but it usually is fluid. I have to be so careful about it and unfortunately I retain excess fluid very easily. I was excited the other day because I had gained a pound, and my daughter laughed and said “you’ll probably lose it tomorrow”…..she was right. She understands my issues and worries about me, but she stated what usually does happen.

I think I look like a bag of bones, which I know is not a good way to think of myself. But that’s the way I see “me” along with the other health problems that weighs on my mind. I told my daughter recently that I feel my body has betrayed me. I feel the same inside of who I am, but cannot physically do things I used to take for granted. The fatigue, shortness of breath, frequent rest breaks, weak muscles, decreased strength, etc – it’s hard to accept since I don’t see myself that way from a mental/emotional point of view.

[Colleen]

@deetweedy my son can well relate to much of what you shared. In fact, just last night he was talking about his memories of how he felt about himself when was in heart failure.

I know it’s easier said than done but try to remember that what’s not important is how you think others might see you but how you see and feel about yourself.

I’m thinking about a meme that has made the round of a tiny orange kitten looking in a mirror and seeing a lion.

You are a lion!

You are strong willed, keep getting back up when you are knocked down and most of all, you are beautiful inside and out!

[jen-cueva]

Hi @deetweedy, you’re not alone in your thoughts about body image. I, too, sometimes have felt the same. Thankfully, I’ve gained a few pounds from where I was before. But I miss how strong my body was.

This is why I’ve started PT and try to get 3 light exercise sessions weekly. It’s all in moderation and as my body tolerates. But I also remind myself how much this body has carried me through. That’s amazing, and on my good days, I’m grateful I don’t look like all I’ve been through. I am working as best as possible to retain my strength and hopefully build a little, if possible.

I love smoothies and make them similar to you. But that PB and chocolate chip sounds yummy, and I eat as I type. If only I could eat all I think sounds so good.

The meme that @colleensteele shared is perfect for your post. I love that!

[DeLois Tweedy]

Colleen and Jen, thank you both for your responses to my post. I’m not quite seeing the lion yet, but I’m working on it!

Seriously, I can usually keep things in perspective and (from my getting older I guess) can pretty much ignore the stares and things people say. Lol I do hate seeing my posture so bad (I have scoliosis and lumber degenerative disc disease, plus skeletal effects from radiation). This in turn makes my balance off very frequently. All this added to my thin frame (i.e. bag of bones) is sure to bother me.

But, as most of us do, I plug along every day, and am grateful for each new day. My plus is that I have a very strong faith, and when needed can pull from deep inside to find what I need to stay positive. No, it doesn’t change my outward appearance, but I know I am still the same person inside, maybe even stronger, and this gives me comfort.

[DeLois Tweedy]

P.S.  I’ll keep looking for the lion 🦁 🙂