Opsumit Side effects

[Cody Hanson]

I am sorry you are having such a hard time. Sounds like there is a lot going on. I would defiantly talk with your Hypertension team before changing any routine. I would also try putting your feet up a couple times a day if possible to help with the fluid retention. I had a stuffy head and for a few weeks, one thing they suggested to me was using a nose spray to help it. I still do it every now and then if I am getting clogged up. I hope they find some resolution for you soon. My best advice is to communicate with your hypertension team some things work for some and not others, we are all different people. Best of luck to you!

[jen-cueva]

Hey, @Roger Bliss, I’m sorry to hear about your ongoing increased symptoms. I know that Opsumit can cause additional swelling and the other symptoms you describe. However, I wouldn’t expect that fever. Did you report these concerns to Dr. Yang?

In the meantime, elevating your feet with some pillows and watching how much fluid you take may help.

But, as @Cody Hanson mentions, we are all different, and the best thing is to keep your PH team updated and make any decisions with them. If you feel these symptoms are all from Opsumit, maybe it isn’t the best treatment for you.

Hopefully, you’ll see some relief soon. Please keep us posted on your feelings and your team’s words.

[Lynda]

Hello There,

I have been on Opsumit for about a year and a half and the occasional sinus issues that can be solved with nose spray appears to help. I am sorry you are having these issues I would check to make sure other things outside the Opsumit could be causing it IE many cancer treatments cause lower extremity swelling, fever etc. I hope this helps and I hope you find some solutions and answers!

Make it a great day!

Lynda

[jen-cueva]

Hi @Lynda, thanks for your comments to @Roger Bliss about other reasons, sources of the swelling, etc. It isn’t always PH or PH treatments causing an issue but possibly other health concerns or treatments. It’s frustrating not knowing, but also, at times, the effects can be a compounding factor of two treatments at once, like cancer treatments with Opsumit may increase side effects.

Lynda, which nasal spray did you use? Thanks so much for sharing your experiences and feedback on this. We all need to “make” it a good day! I LOVE that from you. As I always say, “Make it count” is part of my voicemail message. ☺

How are you making today a great day?

[Karen]

Hi, I didn’t find out I had PAH until about 2 1/2 years ago and by then it was severe. I also have third stage/end stage cirrhosis. Liver numbers have been very good for years but this PAH finally made itself known. I tried opsumit, very low-dose because of liver disease, for about a month and a half before the side effects became to obvious that it wasn’t helping me.

Once I stopped taking it, I felt better just because I wasn’t having the symptoms the medication was causing.

As others have mentioned, each and everyone of us is unique and responds differently to medications.

Next stage for me is a liver transplant, which is what my doctors are gearing up for now. In hopes that it will help the PAH.

I wish you luck in your healing process, it’s definitely a journey.

[jen-cueva]

Hi @Karen, thank you for sharing your thoughts and experience with Opsumit. I’m sorry that they caught your PH when it was already severe.

My BIL had a half liver transplant from his cirrhosis just before Christmas. His older brother was a donor. But, like you, his numbers were pretty good for some time, and they had taken him off the transplant list.

But with his increased symptoms and numbers starting to fluctuate again, the team suggested this, and he is doing well now. Of course he still has the post-transplant medications he has to take and that has been challenging to figure out which treatments and how much his body needs. I wasn’t aware that they did half a liver transplant.

Despite your personal health challenges, which I know must be a ton of prepping pre-transplant, you offer words of support and encouragement for others. That’s so thoughtful of you- thank you. 💜

[Lynda]

Hey There,

I use Flonase mostly a few times a week. I like you have other things going on CREST Syndrome and Scleroderma which is possibly where they think the PAH came from which both have their own issues and side effects from medicines BUT the Opsumit has worked well for me with Nifedipine and Tadalafil. I have been on a clinical Trial as well for about 9 months. I hope this helps!

Make it a great day!

Lynda

[jen-cueva]

Hi @Lynda, thanks for sharing more about your use of Flonase and your other coexisting health conditions. You’re right; with so many issues and the medications to threaten those, PH can quickly complicate things.

But I’m grateful to learn your Ospumit and other treatments work well for you. How exciting that you’re on a clinical trial. Hopefuly you can share more about that soon. How long do you think you’ll be in this trial? Can you say if it’s an oral medication or another?

Make it a great day and a wonderful weekend, my PHriend. 😎

[Jean]

I’m so sorry you are having difficulty. This disease is full of twists and turns. Hopefully your physicians can determine good next steps for you. We all react differently to medications. Opsumit and Sildenafil along with healthy diet and solid positive attitude have worked wonders for me over the last eight years and counting. I hope you find a regimen that works for you. We in this community know how hard it can be. Warm thought sent your way 💕

[jen-cueva]

Hi @Jean, your thoughtful words of encouragement are appreciated, my PHriend. Yes, we all react differently; finding the best treatment plan for each of us is challenging. I’m so grateful to learn that your combination of Opsumit and sildenafil works well for you. What diet do you follow? Is it a heart-healthy diet?

Don’t forget your positive attitude; starting our day with this mindset sets the stage for the day, I believe. Thanks again for your support despite PHighting your battles. 🤗

[Mari-Cris O’Neill]

I have been on Opsumit for 3 1/2 years since my PAH diagnoses and have not had side effects. I am also on Sildenafil and Tyvaso powder. I, too, have CREST and scleroderma which my doctors believe is the underlying cause for PAH.

[jen-cueva]

Hi, @Mari-Cris O’Neill; your treatment plan is working well for you. Also, your medical team sounds on top of things. It helps to have such a great care team when battling PH and other issues like scleroderma. We seem to have many members who have PH and some autoimmune diseases.

Which were you diagnosed with first? Thanks for taking the time to share your feedback here about Opsumit.

[Lynda]

Hello There,

I had just read your response and had never met someone else with CREST syndrome and Scleroderma which is believed where my PAH came from. We are unique indeed!!

[Roger Bliss]

First off I wish to thank each and everyone of you for your responses. You have no idea how much your support means. I have not been in such a bad drug induced state since 2020 when was down for 2 months. For the first time since I have been on this forum I can honestly say I need your support & prayers.

Right now am in such a brain fog that I should not make any serious decisions. ME is taking my phone calls.

We have not had over 2 hours sleep any night since Monday when this hit me. Both of us living in the pickup camper in SD she had nowhere to go. Got back to Yuma today (Thursday). Tonight and every night I will sleep in the camper till my night coughing stops.

Now it’s Friday. Kept falling asleep last night and couldn’t finish. We both slept good…..thank God!!

Naturally, I stopped taking Opsumit. It intensified my sinus problem. Coughed day and night. Bad brain fog. Lowered my oxygen level. It never would go over 95, was in the high 80’s in the morning. Lowered my blood pressure in the morning and night got as low as 90/50 one morning. Feet swelled up, back ache in the kidney area, real short of breath. Basically I am a real mess.

My wife was on the phone with the pharmacist yesterday. In the past she was told I am not starting any new drugs until my sinus problem was cleared up. Now she says the doctor wants me to start taking 2 new drugs……..huh??? The pharmacist is supposed to call back today….guess we will see what happens.

[jen-cueva]

Oh no, @Roger Bliss, I am so sorry to hear about all of the problems you are experiencing. I am grateful you and Mary Ellen got more sleep last night. Sleep helps. My brain fog intensifies if I miss a night or am not sleeping well.

But with all you are experiencing, low oxygen saturation and BP, I am concerned that they want to start two new meds! Have they not seen and evaluated you? If it were me, I would go to the hospital, even in Yuma, and have them check you out. I’m worried that 1) your kidney function may be impaired, causing the back pain and also the swelling, and 2) all of the symptoms you are continuing to experience.

You probably want to stay away from doctors and hospitals, but it sounds like you need an evaluation in person to see if there is anything they can do to help offer you relief and get you back to feeling better. Like you and ME, I would not just start new meds without being checked out first. BTW, Yuma Regional does have a PH specialist, too.

I know it’s Friday, and you aren’t fond of the medical field already, but you sound like you need some relief soon, my buddy. Of course, you and Mary Ellen are in my thoughts and prayers—big, gentle hugs from SD. Please have ME or you update when you feel up to it. We gladly offer you all of our support, my PHriend. 🤗🙏

[Roger Bliss]

I am feeling a little better today. I still have the highest regard for Dr Yang. She is a good person. While the Pharmacist I have been dealing with is a bit over zealous. She reminds me of a car dealer trying to sell me a car. Maybe she gets some kind of commission on what she sells???

The bottom line is I am not taking any more drugs for a while. I am still getting IVIG (antibodies) infusions once a month. They have side effects too, although I didn’t have any till 3 weeks or so after taking Opsumit. The way I look at it is you are taking 2 new drugs and have a reaction……..how do you know which one caused it??? I want to see what happens with the IVIG before I take anything else.

As far as strange doctors and hospitals go, they don’t know much about PH or CLL. Most never heard about the oddball drugs we take. There isn’t anything they can do except scratch their head.

I am going to go back to the herbal drugs. They didn’t hurt me and it felt like they may have been helping?? I wasn’t on them long enough to know one way or another.

[jen-cueva]

Hi, @Roger Bliss. I’m happy to hear you are feeling better. I hope today is even better after the weekend. But yes, if starting two meds simultaneously, nobody would know which, if any, is causing negative side effects or reactions.

I don’t blame you, as you are tired of trying these medications and having bad reactions with no improvements. Take care, know you are the best advocate, and know your body. We appreciate your update and hope and pray you continue to feel better, buddy.

[Roger Bliss]

I am getting a little better each day. I have never had any luck with prescription pills for cancer or PH. I did take Tyvaso for about a year. It didn’t hurt me, but I never felt any better either. Just wondering if there is some kind of inhaler or intravenous therapy for PH? I have to come up with something that works.

[jen-cueva]

Hi, @Roger Bliss. I am glad to hear you’re feeling better each day. Here’s a link to the various treatments; some are intravenous, subcutaneous, and also inhalers, along with oral medications. I wonder if the new treatment awaiting the FDA’s approval in March would better fit you. It’s an injection every three weeks, I believe. I’ll try to link that information, too. Plus, so many are in the pipeline to hopefully be approved this year. Maybe ask Dr. Yang if she has any suggestions on which would work best for you.

https://pulmonaryhypertensionnews.com/approved-treatments-for-pulmonary-hypertension/

https://pulmonaryhypertensionnews.com/columns/behind-every-new-treatment-ph-are-dedicated-professionals/

pulmonaryhypertensionnews.com

Approved Treatments for Pulmonary Hypertension – Pulmonary...

No description.

[Roger Bliss]

Thanks for the info. I will talk it over with my doctor

[jen-cueva]

Hi @Roger Bliss, how are things going this week? Are you feeling back to your baseline? How much longer until you all head back to Alaska? Thinking of you, my PHriend.

[Roger Bliss]

Things went from bad to worse. Went to UCSD for a simple CT scan. They sent me to the emergency room. I ended up spending 4 days in the hospital. Turns out I had way more things wrong with me than I thought. The radiologist picked up a small blood clot in my lung. That turned out to not be a big deal. I also had low sodium, bad cough and pneumonia. The big deal was the low sodium. It was down to 122 where 135 is normal. Guess I could have gone into convulsions if it got much lower. They wouldn’t let me go home till my sodium got to 130. I had 2 needles in me, with as many as 6 bags of “stuff” running at the same time. How many things was caused by opsumit…..I don’t know. For sure the pneumonia as it turned my sinus infection to pneumonia. My sodium has always been border line low…..but never this bad.

To make things more stressful my hearing aids were “in the shop” being fixed and were ready to be picked up. I could only get bits and pieces of what people were saying. ME stayed in the room with me during the day to “interpret” and figure out what was going on. What a disaster!!!

Most people tell you to be on a low sodium diet and drink plenty of water. Not me……I need to do the opposite. I am restricted to 1.5L of fluid per day and take salt pills 3 times a day.

I have my regular appointments with my doctors already scheduled. Now I am waiting on follow up appointments with the Cardiology and Allergy clinics. I must say I had to end up in the hospital, UCSD is the place to do it. They gave me excellent care.

[jen-cueva]

OMG, @Roger Bliss! What an eventful month you’ve had, my PHriend! I am so grateful you are feeling much better after all of this! Yes, UCSD is excellent, and I am so thankful they caught your blood clot! That, on top of pneumonia and low sodium, is a hot mess, as I say! I’m so sorry you had to go through that, although I’m grateful you had that CT planned.

You know, I also have low sodium (hyponatremia) and had that, too, while I was in, among other complications. Yes, mine has landed me in the ICU many times. Mine didn’t show up until after I was diagnosed with kidney disease. But yeah, after years of being told to eat low sodium and stay hydrated, I now eat some sodium to keep it balanced but limit fluids to 2 liters. It is great that the sodium tables help yours. I have to get IV sodium chloride when mine drops too low. It’s never normal, but my normal, we now know. You’re not alone with this; I only know a few other PH patients with low sodium through the years. Beware, too much sodium is just as bad! It is so challenging to find the best balance for our bodies. Hopefully, yours is temporary. Did you have any confusion or hyperactivity with yours?

I’m so happy you’re feeling much better, and I took excellent care of you. What plans do you have this week?

[Roger Bliss]

My sodium has always been border line low….135,134. However this time it shot way down like rock all at once. Hard to tell what caused it.

I did have one weird thing happen. Got a little chilly outside and went in the camper to warm up. Had the place up to 90* and sill shivering I was shaking so bad I couldn’t drink the cup of tea my wife made. Once got in bed I started feeling better. I have no idea what caused it. Never had that before.

[jen-cueva]

Hi, @Roger Bliss. Do you take diuretics (fluid or pee pills)? That can be with us trying to limit salt, too. Also, drinking too much water can wash many electrolytes out. Do you sweat a lot, in general?

My body tremors; I used my heated blankets and couldn’t stay warm. My drinks spilled, and my hubby said we may need to buy a kid’s sippy cups if that continues for a long time. I tried eating soup, which didn’t work when it was terrible. This happens when I am low in sodium; mine is never normal per their lab charts; it’s usually about 126-129. In the hospital, it reached 133 after several bags of IV sodium. I didn’t have this issue until my kidneys started acting up. Strange, I know.

[Roger Bliss]

I have tried diuretics they didn’t work. They gave me stronger ones, but I have never needed to take them. I don’t sweat much at all. I usually get too short of breath before I can work up a sweat.

[jen-cueva]

Interesting, @Roger Bliss; I was trying to figure out why you have had that drop in your sodium levels. It’s so wild how I’m told I don’t follow the textbooks. And here are you and others who have had experiences that are different from mine. That shows us that we are all different, and depending on what is going on with our bodies, etc, a textbook can’t make a doctor. That’s why I LOVE my team, who thinks outside the box, where I am usually at. Hehe.

I hope you and Mary Ellen have a much better weekend, buddy!

[Roger Bliss]

I am feeling good now. We are heading back to SD next week. I have 2 doctor appointments, an infusion and an x-ray scheduled for the 19th and 20th. For sure…….no more prescription drugs. I want to enjoy a summer without some side effects.

[jen-cueva]

Hi, @Roger Bliss; hopefully, you made it to SD safely and only for outpatient appointments. I’m grateful you are feeling better. Is the x-ray to see if your lungs are clear or something else? I know your infusion is your cancer treatment.

I don’t blame you as far as no more prescription medications, especially with your body’s reactions to some of them. Enjoy your summer back in Alaska, buddy! Let us know how things go and when y’all get back to AZ.

[Roger Bliss]

Just got done with my appointments. Still in SD at Camper-land. We will go back to Yuma tomorrow (3/21). My cancer is doing ok, not getting better or worse. Gonna get the IVIG infusions once a month. My oncologist in AK will take them over when I go home.

My sodium is back in the normal range, 140. I am off sodium pills and the 1.5 liter liquid restriction. They are worrying now it will get too high. Have to get a blood test in a couple weeks to see how things are doing. I can do that at Quest in Yuma and they will send it in. I am off Advair, only need to use it when I need it. They are going to put me back on Tyvaso the same deal I had before. My O2 readings were 100 at both the infusion and doctor visit. I haven’t taken any blood pressure meds all winter.

Just need to get another infusion April 17th and we are heading home……..yea!!!!!

[jen-cueva]

Hi @Roger Bliss, that’s great news that your cancer is stable. It isn’t any worse, but it is undoubtedly a positive.

Wow, yeah, your sodium level at 140 is normal. Hopefully, you won’t have any issues with it dropping or getting too high, which can cause problems. Yay, for you not having to restrict your fluid! Have a nice cold one for me.

How are you feeling about restarting the Tyvaso?

It sounds like you are counting down to that last infusion so you and MaryEllen can return to Alaska. Didn’t you mention selling your business this year?

Take it easy and enjoy Yuma, as your time is almost there this year. Thanks for sharing your updates.

[Roger Bliss]

I get my sodium checked in a week or two so I’ll see how I am doing. The swelling in my feet wasn’t much, but after stopping the salt pills there is no swelling at all. I get blood tests once a month to monitor my cancer and sodium is included in those tests.

I’ll try the Tyvaso again. My motive for going back on it is simple. They want me on something and I know it won’t hurt me. They want me to keep the Uptravi I got last January though. I am doing my best to stay off any more pills. 😉😇

We are both homesick as there are 12 hours of daylight up there now. We both love the light. We would be on our way now, but we don’t have any winter gear. There is still below zero temps in the Yukon.

I have some people who actually have the cash to buy my business/truck. Got quite a few calls over the winter. I’ll see what happens when I get home. Nothing is for sure till the money is in my pocket.🙂 I don’t want to sell, but it’s the right time with prices so high. I do want to travel around in AK and do some fishing and maybe some hunting. For me, selling my truck, is right up there with putting your old loyal dog to sleep. You know it needs to be done, but you just don’t want to do it.

[Lynda]

Hello,

It is my understanding that the trial is for 24 months I have been on it for approx 9 months or until approved by the FDA. It is a daily inhaler

[jen-cueva]

Hi @Lynda, thank you for sharing more information about the clinical trial you are participating in. I hope it benefits you and that the FDA will approve it soon. This year, there are a few new trials to look forward to. Once again, thank you for informing me about your clinical trial, Lynda. I hope it gets cleared by the FDA soon and that we see more promising trials this year.