What Is Your Experience With Adempas?

[Colleen Steele Keymaster]

Many of our members are on Adempas and several questions and comments have come up in the sub-forums about it. Let’s address this topic head on to better help each other. If you are or have taken Adempas please share your experience with us. How has it helped you but also, have you experienced any side effects? A question @carol-alexander recently asked is, “What other medications are you taking with Adempas?”. What questions do you have about it?

[Jen Cueva Participant]

Sorry I have not taken that one , I’ve been on most of the other oral meds at some time . I hope someone is able to help Carol.

[Wilma Doan Participant]

I have been taking Adempas since last week of March, 2019. Blood pressure was closely monitored since was normally on the low side. It seems to be OK and went for review in July. All numbers were up. Doctor was happy with results. Will be going back in September and am hoping for more good news.

Wilma

[Brittany Foster Keymaster]

Wilma,
I am SO happy to hear that your numbers are improving! It is hard to have low blood pressure and some of the PH medications definitely don’t help with that. I’m sure you were getting symptoms when your BP was low too so you must be feeling better with it being more stable. What does your
“good” blood pressure numbers look like for you? Anything below 90/60 I usually get symptoms and have to hold off on some of my medications until the numbers improve.

[Wilma Doan Participant]

My good b.p. is 100 on up. If higher number is below 90 I am to take a pill but not the adempas. I do not like to do that because it is counteracting the adempas. Have only been in that situation a couple of times.

[Brittany Foster Keymaster]

100 and up sounds like a good range to stay in. If it falls below 90 do you usually notice this in your own body with your symptoms ? Are you checking your blood pressures before taking your medications ? Just curious as to how you manage whether or not to hold off on a medication.

[Jen Cueva Participant]

Wilma, I’m glad that you’re monitoring your blood pressure. Do you use a home blood pressure machine? I’m glad that you haven’t needed to hold your meds often. As you mention, holding your Adempas isn’t the best plan. But, I would suggest you DO hold it as instructed by your doctor. These PH meds are known to lower our blood pressures. It’s especially challenging when our blood pressure already runs low.

[Donna Adams Participant]

I was prescribed Adempas yesterday. Still haven’t figured out how I’m going to pay for it. I got pre authorization today but haven’t been told what my cost will be.

[Brittany Foster Keymaster]

Hi Donna,
Feel free to post your own forum topic about paying for medications and what people do to cover the costs of the more expensive and specialty medications. I know this can be a struggle for many, you’re not alone. Many of our members will be able to give you some good advice.

[Jen Cueva Participant]

Hi Donna, I have not taken Adempas. I am sorry that you are struggling with trying to find out how to pay for your PH meds. This is often an issue as PH meds are so expensive.

I did find the link for the Adempas website to see if you qualify for co-pay assistance. Your PH Nurse can often help you with the needed paperwork.

I just wrote a column about the high costs of our medications. You are not alone! Best of luck to you and keep us posted.

[Tom C Participant]

Very pleased with Adempas results. CTEPH diagnosed MAY 2013 and on Adempas since January 2014. Experienced some initial improvement and have remained stable since. On the maximum dose and experience no serious side effects. Age 76.

It is rather expensive so I am grateful to have decent insurance.

[Jen Cueva Participant]

Thanks for sharing your experience with the Adempas, Tom! I am happy to hear that you are satisfied with it and it is working for you. It is also important and helpful to have good health insurance as these meds are so costly.

[V.R. Peterson Participant]

My son took Adempas before his PTE surgery. He also took Remodulin SQ and Opsumit. The biggest Adempas side effect for him was nausea and heartburn. Others have found that taking antacid helps, but if you experience the heartburn, you’ll need to ask your doctor which antacid is recommended (along with the timing of the antacid dose). My son’s insurance company “authorized” him to take Adempas, but they wouldn’t pay for any of it. His doctor worked with Bayer to provide the medication free of cost to him. If you don’t mind doing your own legwork, you can see the various programs offered by Bayer: https://www.adempas-us.com/aim-access-and-financial-support

PHA also lists other financial support for other medications: https://phassociation.org/help/

[Jen Cueva Participant]

V.R., I am glad that you shared your son’s experiences with Adempas pre-PTE surgery. The links provided, I am sure will benefit others. who are having that same issue? It is sad, that it is a med ordered by a doctor and insurance can decide if they will. cover it or not.

You are very helpful in sharing tips for others, thank you.

Although I do not take Adempas, I take other. PH meds and nausea has often been a big side effect for me as well. Thankfully, no heartburn.

[Carol alexander Participant]

Have been on Adempas for almost a year no nausea but heartburn so I tried taking lt with more water it seams it’s the night dose that’s the culprit

Carol

[Jen Cueva Participant]

Hi Carol, that is great that you have not had nausea. Have you tried taking it with a cracker or more food? I know for me, with some meds, I have to take with a little more food, like toast or crackers, to help the GI side effects.

[Brittany Foster Keymaster]

Heartburn is really one of those terrible side effects, Carol. I can relate. Something that helps with my heartburn is to avoid any acidic food or anything too hot at night. I try to have tums handy too or something that is more basic to balance out the acid like milk or a dairy product like yogurt. Also, sleeping up on a few pillows just to avoid the reflux going back into your throat is important too!

[Jimi Mcintosh Participant]

Been on Adempas for almost five years, it has a few side effects, like low grade headache, mild anxiety. My ability to walk has been greatly reduced from 2 miles, several times a week. Stairs, hills and inclines, leave me winded. Seems to be kidney and liver friendly, requires a higher level of potassium supplements. No
Interactions with other meds. Bayer offers patient assistance from free to less time Han $50.00/ mo. They administered and handle shipping. You have to titrations from 0.5mg to max of 2.5mg , 3 times per day. Formerly on Adcirca and Tyvaso, could walk 2 miles, but can play havoc on kidneys and blood pressure.

[Brittany Foster Keymaster]

Hey Jimi,
I know it must be such a hard balancing act when yo are managing multiple conditions, especially ones that are so conflicting with one another. I can relate to how frustrating that is to get the treatment “just right” so they don’t interfere with other parts of your body. Figuring out what works for you and what doesn’t is important but it’s time consuming and requires tons of patience from yourself and from others around you.

[Jimi Mcintosh Participant]

Adempas works better if you can maintain a close dosing schedule.
You need to maintain a specific
Level system, to avoid aniexty, occasional headaches. The highs and lows are more manageable. Not every patient will require the maximum 2.5mg
Three times per day

[Brittany Foster Keymaster]

Thanks for this advice, Jimi! I know it is appreciated. Do you find that you get the anxiety and headaches closely after the medication is given? Do you do something to help manage these symptoms or take an anti- anxiety medication? It is hard when anxiety and headaches happen BECAUSE of a medication that is trying to help you. I know it’s unsettling.

[Jen Cueva Participant]

Terrific tips, Jimi! I’m certain those on the Adempas appreciate it. I didn’t know anxiety was a side effect from Adempas. I know headaches are common side effects from most PH meds. Thanks for the education.

[Carol alexander Participant]

I will be going to 2.5 as soon as my shipment arrives Don’t know where I go from here

[Brittany Foster Keymaster]

Hi Carol,
Have they discussed a combination therapy for you? I know some with PH are on a combination of treatments and medications that work well together. Maybe this is a good question or thought to bring up to your medical team. Definitely don’t be afraid to ask “what’s next?” and speak up for your health. Looking ahead and thinking ahead about your health is a GOOD thing and it’s comforting to know that there is some plan in place and a Plan A, B, and even C. Keep us posted! I hope you can tolerate the 2.5 well and I am thinking of you during this process.

[Jimi Mcintosh Participant]

Carol, You will do fine on Adempas, Bayer has a great support staff, pharmacist, nurses and other professionals. Do not hesitate to call them, if you experience a sudden change. Remember, if you miss a dose for 3 days, you start titration again. I have only experienced a few interactions, usually with over the counter meds.

I just miss the ability to push myself
Further, I walk as far as possible, rest and finish the course. Some of the older seniors wonder why I cannot keep up. I have not this far required a combo drug regiment, hopefully , that is behind me.

Good luck, you have reached a new level and a bigger challenge.

[Brittany Foster Keymaster]

Jimi,
You really motivate me because you are doing ALL you can and are trying to stay as active as possible, even if that means resting and stopping when you have to. That is a sign that you are listening to your body and aren’t going to push the limits past the point where you know you need to rest. That’s a huge part of acceptance over this condition and a huge part of self care is being aware of your physical symptoms and actively doing something to help yourself! You should be proud of that

[Carol alexander Participant]

Hi Jim it seams to me while I was on Adempas 1.5 l had no swelling of my feet now that iam on 2 iam retaining fluid do you have any problems with fluid retention?

[Brittany Foster Keymaster]

Hi Carol,
I am not on this medication but any type of fluid retention is something you should definitely bring to the attention of your doctors especially if you are thinking that it is associated with an increase in medication. I am sure you are already on water pills like lasix etc, correct? If not, this may be part of a treatment plan to bring up too.

[Jen Cueva Participant]

Hi Carol, I agree with Brittany, please let your PH doctor know about the increased swelling. It may be something that is only for a while as you’re adjusting to the higher dose. But it could also be other issues, as well.

I know a few of the meds I had issues retaining fluid. I had to stop those, as I have fluid retention already. I take 3 diuretics to help.

I hope that your swelling resolves, but please keep us posted.

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