Jardiance for Pulmonary Hypertension

Posted by carculmer @carculmer, Feb 26 8:51am

I have finally been formally diagnosed with mild pulmonary hypertension (pressure of 30) and have been prescribed Jardiance. I think the dr. really just wanted me to try a diuretic but I asked about Jardiance and he did agree in the end. I think he is "old school" and I don't fully trust that he is into medication for my "mild" condition. He told me he has patients who are "way worse" than me! I'm interested in others experience with Jardiance for this condition. How did you know if it was helping? Any side effect such as genital infection which I keep reading is something to watch out for.

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Profile picture for marybird @marybird

Here's my experience with pulmonary hypertension, seems it was correctly called by my cardiologist as being caused by left diastolic dysfunction- as he explained it strain on my heart over the years from various risk factors, ie, chronic hard to control hypertension, being overweight, as well as other factors such as genetics. CT scans on my chest ( for cancer surveillance) showed an enlarged pulmonary artery at the base, suggestive of pulmonary hypertension and two echocardiograms showed pulmonary pressures of 65 and 58 mm/Hg, respectively. I had no symptoms I could say was due to this condition, except for some peripheral edema, I also have paroxysmal A-fib and other issues that occasional tiredness and shortness of breath could be blamed on, but no lung issues. The cardiologist prescribed a fairly low dose of furosemide ( 20 mg/day) and that took care of the edema and I just felt better. I continued the furosemide, and the cardiologist ordered another echo which I had done in February, this time the pulmonary artery pressure was within the normal range at 34 mm/Hg ( normal less than 35). I also had noted my blood pressure was consistently within the normal range with the addition of the furosemide to my medication list.

The cardiologist had emphasized lifestyle measures ( weight control, exercise, exercise, exercise and blood pressure control) as the best way to ensure as good as possible heart health. I'd seen him before the third echo showing the normal pulmonary pressure and he had instructed me to continue all the medication I was taking including the furosemide- which is ok with me as I've taken it all so long I am used to it. During my cardiac visit we discussed the other medications used for pulmonary hypertension and he said for patients who have shortness of breath and other symptoms from pulmonary hypertension due to diastolic dysfunction he prescribed sildenafil and they found that was helpful. We decided I didn't need it as I'm not really symptomatic. We were fine with just the furosemide, and my PCP ( who I saw after the 3rd echo) suggested I keep taking the furosemide as long as my kidney function remains good- it certainly seems to help with things. And it looks as though I don't need a RHC, thank goodness!

I hadn't read anything about using Jardiance or any of the other SGLT-2 inhibitors for diastolic dysfunction or other heart failure, though I now see there some emerging studies for their use in patients with pulmonary hypertension Type II- associated with right or left-sided heart failure, but that still looks to me to be a work in progress. I might caution someone using these drugs to be aware of the side effects that can occur from these drugs, in particular the development of a perianal abscess that can lead to necrotizing fasciitis, sepsis and death if not treated as soon as possible. This happened to my brother, who was taking one of these drugs for his diabetes and also had heart failure. I don't know if he was taking Jardiance or another one of the SGLT-2 inhibitor drugs, but apparently these side effects are particular to all of this type due to their mechanism of action. I think these side effects are rare, but they are certainly something to be aware of and to look out for for people using those drugs.

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@marybird so for me I do not have congestive heart failure. I have persistent atrial tachycardia and an ejection fraction of 44-50 which is borderline normal. I do not have diabetes or any kidney issues. I have read of the horrible side effects. The cardiologist told me it would make me pee more and that is it. My sister had a severe kidney infection and her EF went to 25% when put on jaundice for her kidneys. She also had congestive heart failure. They took her off of it immediately. Farxiga is the same drug by a different manufacturer. I can’t find a single study supporting prescribing it for someone like me. Even when it is given to heart patients. They are ones who have congestive heart failure. I am inclined to never take it. I will stick with Lisinopril and metoprolol and eliquis. Thanks so much for your insight. Side effects of these drugs are worse than the “possible” benefits. Drug companies spend millions to develop them and then push them on patients even if they don’t work. My sister cardiologist took her off them. They were prescribed my her endocrinologist for her kidneys. And they just made those worse too.

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Profile picture for wews @wews

@marybird so for me I do not have congestive heart failure. I have persistent atrial tachycardia and an ejection fraction of 44-50 which is borderline normal. I do not have diabetes or any kidney issues. I have read of the horrible side effects. The cardiologist told me it would make me pee more and that is it. My sister had a severe kidney infection and her EF went to 25% when put on jaundice for her kidneys. She also had congestive heart failure. They took her off of it immediately. Farxiga is the same drug by a different manufacturer. I can’t find a single study supporting prescribing it for someone like me. Even when it is given to heart patients. They are ones who have congestive heart failure. I am inclined to never take it. I will stick with Lisinopril and metoprolol and eliquis. Thanks so much for your insight. Side effects of these drugs are worse than the “possible” benefits. Drug companies spend millions to develop them and then push them on patients even if they don’t work. My sister cardiologist took her off them. They were prescribed my her endocrinologist for her kidneys. And they just made those worse too.

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@wews and @marrybird,

wews, I am sorry to hear about your sister's ad experience with an SGLT2 Inhibitor. We all respond to medication differently. For me, Jardiance is doing what my cardiologist wanted and I have had no side effects and am grateful it is working. Until age 79 I only took a low dose medication for hypothyroidism. Then things changed.

At 78 I was diagnosed with a genetic heart disease, Apical Hypertrophic Cardiomyopathy. I is a thickening of the left ventricle at the apex. It causes high loading pressures and is sometimes considered to cause Hear Failure with Preserved Ejection Factor. Mine is around 60. Then it led to Afib with rvr which is difficult to tolerate and to treat when you have ApHcm. After several unsuccessful rate control drugs, I was started on an antiarrhythmic drug (Dofetilide) which worked well for 10 months and then I started having breakthrough episodes. As they continued, my Mayo cardiologist prescribed Jardiance to "fine tune the diastolic dysfunction" and hopefully lower the filling pressures.

Since starting Jardiance, I have only had 2 short breakthroughs and that was early on before it completely took effect. So, I am thankful for this drug even though I would like to be as drug free as possible. I am now 82. I have never had any heart failure symptoms and I exercise regularly (strength training and I walk 2 1/2 to 3 miles a day when weather permits. I am glad metoprolol works for you wews. It was terrible for me. Lowered my blood pressure and caused extreme fatigue and did nothing for my Afib rate. Funny how drugs work for some and not others. Just shows how individual we all are.

Good luck to both of you.

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Thanks so much for your insight. Because I don’t have heart failure and am feeling well I just hesitate to take another medication. Like you I couldn’t tolerate flexanide or sotalol. They latter almost killed me and neither of them put me back in sinus rhythm. Metoprol controls my rate well and I feel well. Since I don’t have any structural problems with my heart beside enlarged atria from the afib when I didn’t know I had it, I am going to try not to take this drug because you can’t ever stop it once you start it and because my sister has such a terrible reaction to it. I do appreciate how every person is different and I guess that is why we have choices. My sister got torsades from tikosyn and almost died. It caused her heart failure. She went from having afib to having congestive heart failure and needing a pacemaker. I won’t take it either because we are so alike genetically. Hope you continue to do well. I think I am going to tell my cardiologist I want to leave well enough alone rather than adding another drug which may or may not ease the burden on my heart. Lisinopril is working well to do that so far without problems.

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I'm appreciating all the comments and different perspectives on taking the SGLT-2 inhibiters ( Jardiance in this case) the pros, the cons, and individual experiences with these drugs.

Carculmer, don't know if you've gotten answers to your question about what a perianal abscess is- peri means "around" and these abscesses form between the genitals and the anus. Here is a link describing what these are, how they are treated, risk factors and complications.
https://www.webmd.com/a-to-z-guides/anal-abscess
Thing about those is that they can't be ignored, they can spread beyond the area they started, and invade the deeper tissues, tendons, fascia ( necrotizing fasciitis- also known as the "flesh eating disease" if not treated in their early stages- usually by surgery to drain the abscess and debride the infected tissue, and antibiotics. You might note in the side effects listed for the SGLT-2 inhibitors it's stated that these perianal abscesses can spread quickly and should be considered medical emergencies, and to get help quickly.

My brother apparently had a perianal abscess, didn't realize what it was, and went to a local hospital ER where they essentially told him it "wasn't a hemorrhoid" and sent him home with instructions to see a proctologist to get a biopsy on the area. Two days later he was in such bad shape he had neighbors take him to a larger hospital ER where they admitted him to their ICU. I'm told by then the area was just necrotic tissue, he was in organ failure and septic. He died when they took him off life support. We will always wonder if he could have been saved had the first hospital recognized what was going on and saw that he got the treatment he needed, but no one, his friends, family or anyone else knew what was going on as he didn't tell anyone. I knew he was taking one of the SGLT-2 inhibitors but don't know if it was Jardiance.

He had a number of the risk factors, including diabetes and heart failure that probably contributed to this happening to him, and as I understand it it is a rare occurrence. As Diane mentioned, this side effect has to do with the drugs causing increased glucose excretion by the kidneys, it's suggested that this can result in increased sugar around the genitals and perianal area, especially if the hygiene isn't scrupulously maintained. Seems to me that the suggestions of excellent hygiene, washing the area after urinating, and being aware of the possibilities of yeast infections, or other sores or infections in the area, and getting treatment ASAP if an infection shows up in the area would be a good preventative.

I'd never suggest that someone not take Jardiance based on what happened to my brother, as with any medication it's always a consideration between the benefits and the risks of taking the medication, and any number of people report benefitting from these drugs. I'd admit to being reluctant to take Jardiance, just knowing what happened to my brother, but that's more of an emotional rather than a logical decision. As with any medication, those decisions are made ( or should be) in consultation with a physician who knows the patient's history and if side effects outweigh the benefits of the drug, it's discontinued.

Carculmer, you mentioned that your cardiologist thought you should try a diuretic to improve your diastolic dysfunction (?), was this instead of the sildenafil and/or the Jardiance? My cardiologist started me on the diuretic ( 20 mg/day furosemide) when he got my first echo report showing a stage 2 diastolic dysfunction and a pulmonary artery pressure of 65 mm, and having taken that for well over a year now, it seems to have improved those numbers immensely, along with the lifestyle measures I do. I guess you probably realize that pulmonary artery pressures taken from RHC will be considerably lower than those taken from echocardiograms, and and since my last echo showed those pressures to be within their normal ranges ( less than 35mm, there is variability in the normal ranges for different places where echos are done), I'd assume that the pressure from an RHC would be normal as well.
I recall reading that diuretics are a mainstay in the treatment of right or left-sided heart failure, or diastolic dysfunction, so there's no surprise my cardiologist prescribed one for me. At this visit ( which was before the 3rd echo showing normal pulmonary artery pressure results) we discussed the use of sildenafil, the cardiologist said he prescribed it for symptomatic patients with shortness of breath and it to help. We both decided I didn't really need this drug as I wasn't really symptomatic. I also mentioned that I didn't want to take any of the GLP-1 or SGLP-2 inhibitors as I was afraid of side effects- my daughter had taken one of these for a while and got pancreatitis- twice-, and his response was "well, I won't prescribe them, then"!

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Your brother had quite a hard time of it that's for sure and had poor medical care on top of it. Sorry to hear about it.

I took sildenafil for about a month and then switched to tadalafil because it was driving me nuts trying to remember to take 3 pills a day. Neither of these drugs made any difference for me I don't think. I stoped a couple months prior to my RHC. When I went in for the consultation following my RHC, the cardiologist first started talking about a diuretic 3x week and then I asked about Jardiance which his PA had mentioned to me prior to the RHC so then the conversation turned to taking that. When I go back, I'm going to talk to him more about why it's one and not the other (although I don't think I have any fluid retention issues). I have read quite a bit about Jardiance and it sounds like the complication rate is very low so I'm not too worried. If it lowers or stops my pressure from getting worse I think it will be worth it. (It's just very expensive and I already have another expensive drug I've been taking for years due to Afib - Xarelto.)

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My doctor cardiologist/oncology and women’s specialist put me on Lisinopril for both my heart and blood pressure. It is an old blood pressure medication with few side effects and also helps with ejection fraction. I am taking it and refuse to take jaudinance. You also have to be aware that there are other complications to you if you try to stop it. It was a drug created for those with diabetis and kidney disease. It didn’t work well for diabetis so they marketed it for heart failure patients. Don’t take a drug because you have seen it advertised. Like the writer above whose brother has severe complications, my sister almost died on it. Our genetic history is too identical so I won’t try it or farxiga which is an almost identical drug marketed the same way by a different manufacturer. Americans take more drugs than anywhere else in the world. Take care of yourself! Some are used for people who could maybe use a less severe medication with so many possible side effects.

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