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Have you experienced UTIs with Opsumit?
Forum member @De Bell shares that she is on Opsumit and Tadalifil and experiencing urinary tract infections (UTIs ). She asks if anyone else has experienced this with Opsumit or Tadalifil.
Debbie, I’m aware that UTI is a side effect of Opsumit. Is that why your doctor ordered the tadalafil? I searched online and read this piece about using tadalafil 5 mg in men with lower UTIs. Below is the link. This was new to me, but it may help you a bit.
https://www.aafp.org/pubs/afp/issues/2024/0100/fpin-hda-benign-prostatic-hyperplasia.html#:~:text=The%202021%20American%20Urological%20Association,5%20mg%20of%20tadalafil%20daily.
Hopefully, others will offer you more as they share their experiences. Either way, I hope you and your PH team can find some relief without having to stop the medication.
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12 Replies
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So glad you brought up this issue. I never had a UTI in my life until after I started Opsumit. Until I saw this post I did not make the connection. That being said, I have been on Opsumit since 2019 and only had four UTIs in that time period. I notice that it always occurs when I am traveling by car for one or more days. I don’t know if it is really even related to Opsumit or if it is directly due to my travel habits which include being stationary and drinking coffee, soda more instead of water. Regardless, I usually end up at the doctor’s office the day after I get home. I have always considered Opsumit the easiest of my PAH drugs, but now I wonder if the UTIs are indeed related to taking that drug.
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@Sherri it sounds like you are happy with your treatment except for the UTI’s it is possibly causing. I think there is a medication that people can take who are susceptible to UTI’s that can help prevent them. I don’t know what it’s called or if PH patients can safely take it but it might be worth asking your doctor about. Maybe it’s something you can take when you are traveling as a preventative.
When I did a search <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Methenamine hippurate is a prescribed preventative that is mentioned. I don’t know if this is what my mom’s doctor has considered for her if ever needed or if there is another drug available.
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I thank everyone for feedback and possibly some meds that might help prevent the UTI’s. I have had 1 and I will find out today if I have another one (2 in 2 months). I am going to ask about preventive meds to help or see what suggestions they have.
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Hi @Sherri, sorry to hear about your UTIs. They are not comfortable, that’s for sure! In your case, it could be possible that while Opsumit can cause UTIs in some, the traveling by care. I know as a kid, we traveled a ton by car. I developed a UTI twice because I tried holding it until I couldn’t hold it any longer. That is one big reason why many develop UTIs. But certain medications can also have a side effect of UTIs.
As @Colleen mentions, many doctors use prophylaxis antibiotics if someone is prone to UTIs. I’ve heard Macrobid and Keflex are often used for UTIs. Hopefully, that’s all you will experience.
When traveling by car, ask to stop more frequently and drink water. I love cranberry juice, so I often sip on that, the 100% juice, not a cocktail. Also, I’ve read within the last several years that many post-menopausal women can also be at risk for UTIs.
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Jen, whenever I read posts I learn more and then have more questions about other things. When reading about Sherri I see she spends time in her car. Sometimes it sounds like for hours. I have not driven since diagnosed last June and today is going to be my 2nd time driving and just one of those times (today) is going to be by myself. The scarry issue is I am on Oxygen 6 liters per hour so I freak out thinking I am going to be on the road and my car breaks down and I run out. Are most people with PH on high levels of oxygen?? I am sure it is all about pre planning everything. Are there forums or lectures where I can log into where people talk or have conversations about PAH in general. I feel isolated sometimes
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@Debbie Bell here is a link to our sub-forum “Oxygen Users”. No matter how old the post is you are welcome to comment or ask a question about a topic. Our members are really good about sharing their experiences and trying to help each other with theirs.
https://pulmonaryhypertensionnews.com/forums/forums/forum/support-groups/oxygen-users/?no_frame=1
Your question and concern about the possibility of your car breaking down and being hours without enough oxygen supply is a good one. I will make that a topic in the near future to encourage others to talk about it.
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I have taken Opsumit and Tadalafil for approximately 5 years now and I didn’t even realize that UTI were a side effect. I have not had a UTI while using these two medications.
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Hi @Rayetta, I’m happy to hear you haven’t had any complications with UTIs. Your use of Opsumit and tadalafil for five years offers hope to some, I’m sure.
Thanks for sharing your experience on this topic. How are you managing so far this month?
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I am doing okay. I was diagnosed with breast cancer in January and have been dealing with that, too. I am not able to get treatment locally, so I have had to travel to Denver, Colorado for both my PAH/Scleroderma treatment and my cancer treatments. The trip one way is 6 hours and so it’s not just a quick jaunt. I have been going almost every other week and my last trip was for an appointment on 8th of this month. I am able now to take a break for a while. I had my cancer surgery, and it went well and am currently on exemestane for that. I don’t have to return to Colorado now until September as long as things go well. I am hoping that they do.
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I have used Ellura cranberry capsules. I get them on Amazon. They are a pharmaceutical grade supplement. A uro-gynecologist recommended this supplement as I was having constant UTIs. Thankfully they have helped tremendously!
Good luck, everyone!
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Thank you for that tip @Kathleen McLaughlin ! I never heard of those but will keep them in mind to ask my mom’s doctor about. Have you noticed a difference since taking them?
Gentle reminder to our members…when considering a supplement or over the counter medication of any kind make sure you ask your doctor about it before taking.
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Hi, @Kathleen McLaughlin; thanks so much for sharing about this specific cranberry supplement for UTIs. Many people use cranberry juice and supplements, and they say they help. Since your urogynecologist recommended these, I think they are safe.
As @Colleen mentioned, it’s important to check with our PH team before taking supplements. We are all so different.
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